Openhand48pp(Winter 2017)web

The magazine of Deafblind UK - putting you in the picture
Winter 2017
Inside:
■
■
■
Meet John, the Deafblind Paraclimbing Champion
Raising a Deafblind Child;
an interview with Justin Vollmar
‘Technology and Me’
by Molly Watt
©English Heritage
p24
Accessibility at
Wrest Park

2 Editorial
What’s inside
12 Deafblind
Awareness Week
2017
16 Staying Safe at
Home
24 Accessibility at
Wrest Park,
Bedfordshire
34 Meet John, the
Paraclimbing
Champion
40 Did you know…
about our holiday
caravan?
Editor:
David Evans
Email: dtevans145@
btinternet.com
Production:
Email:
info@deafblind.org.uk
Tel: 0800 132 320
Design:
Tonic Media
Published by:
Deafblind UK
© Deafblind UK 2017
David Evans, Chairman of Deafbind UK
A word from
our Editor
Hello members,
Happy New Year to you all!
(Can you still say that in
February?)
It has been such a pleasure to
meet so many of our members
recently at our regional

Editorial
3
David Evans talking at the recent Peterborough member forum
member forums. I have found
it insightful to hear what you
have to say and especially how
much you appreciate Open
Hand magazine. Some
members said they would like
to see more practical
information and member
stories included in the
magazine. With this in mind,
we would like to take the next
couple of months to review
what we include in Open Hand
and so the next edition will be
the Summer edition in June.
This is slightly later than it
would normally be, but we are
keen to take some time to
make any improvements and
we welcome any further
feedback that you may have
about Open Hand.
As always, if you have
anything you would like to
contribute, please send it in.
We all love to hear about what
our members and groups have
been up to and reading about
this can often be a huge
inspiration to others. In this
edition you can read about two
of our members who have
recently published books and
another who has, amazingly,
summited the Eiger with only
three per cent vision –
incredible!

4 Editorial
Typing on a laptop
DBUK is here to support you in
whatever way you want;
whether that is simply
answering your questions
about sight and hearing loss,
or finding volunteers to help
you become a Great British
Paraclimbing Champion. We
care a lot about our members
and so in this edition we have
included some useful
information and advice to
ensure you stay safe and
secure this winter.
Another key focus for us is to
enable our members to enrich
their own lives and make living
with sight and hearing loss
easier. Digital technology has
always been one of my
passions – there are so many
pieces of technology out there
that really do make everyday
communications and finding
information so much easier.
Therefore, in this issue we
have included a review of a
talking microwave, a radio for
the blind and also a
contribution from our very
own member, Molly Watt
about how technology enables
her to get more out of life.
Please do enjoy the magazine
and I look forward to updating
you again in the summer.
David

Chief Executive’s Report
5
An Update from the CEO
Happy New Year! I am
delighted to open with the
fantastic news that we have
successfully secured funding to
expand our services in Wales!
A grant from the Big Lottery
Fund will enable us to support
more people across Wales over
the next three years. I would
like to congratulate Michael
Wycherley and Rhiannon
Crocombe, our Community
Engagement Officers in Wales,
who are looking forward to
providing more services in the
area.
I am proud to say that we
have had a hugely successful
year and now support over
3,000 members; this is the
most members that Deafblind
UK has ever had and I would
like to extend a very warm
welcome to anyone who has
recently joined us.
It has been such a pleasure to
meet so many members at our
recent regional forums. I
would like to thank everyone
who came along and gave us
such valuable feedback; we
hope to see you again at our
national forum on 30th June!
Liz Bates,
Chief Executive of Deafblind UK
Finally, I would like to take this
opportunity to remember our
volunteer and member Sally-
Anne Elton who sadly passed
away in November. Sally-Anne
was actively involved with our
Newham group and will be
sorely missed.
Best wishes,
Liz

6 News
Another Successful Year for
Deafblind UK
Digital Inclusion Officer Tim Locke supporting
a member to use a tablet computer
Deafblind UK was proud to
announce a number of
successes at its Annual
General Meeting on
Wednesday 1st February.
Thanks to donations from
community groups, charitable
trusts and individuals, we have
continued to grow throughout
England, Northern Ireland and
Wales; meanwhile our
volunteer team has grown to
400, supporting 580 deafblind
people.
On the technology front, we
now have 40 tablets in our
library which are loaned to
members throughout the
country, whilst our Information
and Advice line received 1,500
calls last year.
We’re also very proud of our
independent living services, in
particular our social enterprise,
About Me, which grew by 10
per cent in the year ending
March 2016. Despite the
current financial climate, we
have been able to provide 24-
hour care and support, as well
as awareness training and
specialist assessments. The
service also better enables
members to receive care in
the NHS thanks to improved
communications.
Our supported housing
scheme at Rainbow Court,
Peterborough, currently
houses 15 tenants and we are
searching for one more to fill a
current vacancy.
A communal room at Rainbow Court
Overall, we have had a hugely
successful year supporting
members all over the country
and look forward to seeing
continued growth in 2017.

News
7
Successful Launch in Bristol
for Deafblind UK
information about their
services, as well as a number
of visual impairment charities,
reading groups, day centres
and care co-ordinators.
The Deafblind UK launch in Bristol
There was yet another roaring
success this winter as
Deafblind UK launched their
services in Bristol.
On 23rd November the team
headed to the Action for Blind
People/RNIB building in
Bedminster, Bristol, to raise
awareness of deafblindness
with a variety of activities.
Social workers, sensory
impairment support workers
and other professionals from
Bristol City Council joined in
with a deafblind awareness
workshop, a talk on inclusive
“off-the-shelf” digital
technology and networking
meetings.
The event was also attended
by Action for Blind People, who
had a stall set up to share
Attendees were thrilled with
the success of the event,
saying: “It was a very
interesting and useful
meeting, allowing us to
expand our horizons”.
The launch was hugely
important for Deafblind UK
which is actively trying to let
more deafblind people in
Bristol know about its services.
By educating local
professionals about life with
deafblindness and how to
support those living with
sensory impairment, Deafblind
UK hopes to support more
members in the area.
Deafblind UK Community
Engagement Officer Kelly
Dowell said: “It was great to
see so many like-minded
professionals all working
together to empower and
support individuals with a dual
sensory impairment.”

8 News
Forums
Staff and members at the Peterborough member forum
Deafblind UK Member
Forums
2016 saw the introduction of
our member forums; a series
of events designed to give
members an opportunity to
help shape the future of
Deafblind UK. We invited all
members to come along to
their local forum and share
their views on our services, to
make sure they are being
supported the way they want
to be and to keep members
informed of all the updates
and opportunities available to
them. The forums are also a
great opportunity for members
to meet and get to know each
other as well as the Deafblind
UK senior management team,
such as CEO Liz Bates and
Chair David Evans.
Staff and members at the Belfast
member forum
Since September 2016 we
have held forums in
Peterborough, London,
Wolverhampton, Cardiff,
Wrexham, Manchester, Belfast
and Bristol, with a National
Forum set to be held on
Friday 30th June at
Deafblind UK’s headquarters in
Peterborough.

News
9
in large print, XL print, XXL
print, Braille and audio CD so
please let us know which
format you would prefer!
National Forum 2017
Handmade goodies for sale on
display at the Wrexham forum
Key themes
Members discussed a wide
range of subjects at the
forums including: The content
of Open Hand magazine and
the way they receive it, social
outings, activity taster
sessions, Deafblind UK’s
caravan, more services for
younger members, wellbeing
calls, volunteering and other
general information and
advice.
We have taken all of the
feedback on board and will be
working hard over the next 12
months to address the issues
that were raised. For example,
we are now aware that some
members are not always
receiving Open Hand in the
right format to meet their
needs; Open Hand is available
On Friday 30th June,
Deafblind UK will hold its
National Forum at the National
Centre for Deafblindness in
Peterborough. This will be a
chance for members from
each region to network and
share their views on what they
want and need from us. The
Deafblind UK team, including
members of the Board, will be
there to listen to your
thoughts and feedback
directly. If you would like to
attend the National Forum,
please contact Amanda Easton
on 01733 358100 or
email amanda.easton@
deafblind.org.uk.
The forums have been a
! great success, with many
members telling us that they
have enjoyed the opportunity
to give their thoughts and
input into our services.
Therefore, we intend to run the
forums again and continue to
give members this opportunity.

10 News
Become a Trustee for
Deafblind UK!
The National Centre for Deafblindness in Peterborough
Deafblind UK is currently
recruiting Trustees to join its
board. As a deafblind person,
the ideal candidate will be able
to bring his or her experience
of sensory loss to the board
together with creative ideas to
help shape the future of the
organisation and the people it
supports. This role is vital in
shaping and leading Deafblind
UK in its future direction.
As a member based
organisation for people with
dual sensory loss it is vital our
board is led by and with
deafblind people around the
table. This enables Deafblind
UK to deliver exactly the right
services to people with dual
sensory loss. The Trustee role
holds wide ranging
responsibilities including
overseeing the work of, and
inspiring, our 450 colleagues

News
11
and volunteers, with a
commitment to improve the
lives of those affected by dual
sensory loss.
Though it is not essential, it
would be helpful for
candidates to have experience
in one or more of the
following: Dual sensory loss,
physical/learning disabilities,
care and support services,
government policy, strategic
leadership and management,
fundraising, marketing and
service/business development.
We are keen to receive
applications from members
across the country and whilst
Trustees are expected to
attend board meetings in
Peterborough, support is given
to help deafblind Trustees
attend.
Trustees will join the board on
a three year basis, with the
possibility of a maximum two
more terms of three years
each. Within this, a trustee
must commit to four board
meetings per year, plus a
Trustee’s Away Day. Trustees
will also work with the Senior
Management Group outside of
these meetings and will keep
up to date with the charity by
reading Deafblind UK board
papers and other
communications in order to
lead and be an active part of
the board of Trustees.
The Trustee position is an
unpaid, voluntary role
(expenses will be paid) and
offers an incredible
opportunity for deafblind
members to be involved in
helping Deafblind UK grow and
raise our profile throughout
England, Wales and Northern
Ireland. We are looking for
visionaries who can help to
lead our successful charity to
benefit even more members.
To apply, simply send your CV and covering letter
!
or an email detailing your skills and experience to
helen.meadows@deafblind.org.uk. Applicants are also
invited to discuss the opportunity informally by telephone or
typetalk – just dial 01733 358100 to speak to Liz Bates, CEO
or Helen Meadows, Head of HR and Business Support. All
applicants will be responded to as soon as possible.

12 News
Celebrate Deafblind Awareness
Week 2017 with Us!
Deafblind UK shows off its brand
Each year, representatives at
Deafblind UK get together to
raise awareness about
deafblindness through
Deafblind Awareness Week.
This year’s events run from
26th June until 2nd July and
the week will see activities
take place across the country.
The theme for 2017 is “Let’s
Talk About It” and the aim is
to show people that
deafblindness is more common
than we might think. We want
to encourage people across
the UK to talk about sight and
hearing loss. This year,
Deafblind UK is especially keen
to see more members getting
involved in the week’s
activities as there is nobody
better to explain what it is like
to live with deafblindness than
our members themselves.
Deafblind Awareness Week
always marks the birthday of
Helen Keller. Born in 1880,
Helen Keller was a well-known
author and political activist
who later became known as
the first deafblind person to
earn a Bachelor of Arts
degree. Helen Keller was a
testament to the strength of
deafblind people, proving that
anything is possible and how

News
13
not to suffer in silence. The
week will also provide an
opportunity to raise money for
Deafblind UK.
Deafblind UK waves the flag at a
recent event
As part of Deafblind
Awareness Week,
Deafblind UK will be
holding a national member
forum in Peterborough on
30th June. For more
information on this event,
turn back to page 8.
important it is to talk about
deafblindness, making this
year’s theme even more
poignant.
While the final plans for the
week’s activities are still being
formulated, the events will
serve to educate the public on
how to recognise the signs of
sight and hearing loss and to
encourage deafblind people
Deafblind UK balloons decorating a
lamppost
If you’re a Deafblind UK member and would like to get
!
involved, there are lots of things you can do. Speak to your
local Community Engagement Officer to find out more about
events in your local area, or spread the word by telling your
friends, family, local clubs and more about your experience of
sight and hearing loss.
You can also help by wearing a Deafblind UK t-shirt when you’re
out and about, or if you really want to get involved, you could
also hold your own fundraising event. To request a t-shirt or to
speak to our community fundraising team, get in touch with us
using our contact details at the back of the magazine.

14 Information
Top Tips to Avoid Scams
Methods of scamming
Scams can come in the form of email
With advances in modern
technology, unfortunately
scams are becoming more
common, particularly amongst
the elderly and other
vulnerable people. Modern
scams can come in many
different forms and are
devised to con an unwitting
person out of his or her
money.
Thankfully, there are a number
of ways to prevent fraudulent
activity and the first step is to
educate yourself about the
various tactics scammers use.
At Deafblind UK we are
conscious of looking out for
the most vulnerable members
of society, which is why we’ve
put together this guide to keep
you safe.
Scammers use different
methods of communication to
target their victims, such as by
post, over the phone, text
message, email, or even an
unexpected knock at the door.
Often they will try to attract
the victim’s attention by telling
him or her that they have won
a prize or inherited a large
sum of money. A door-to-door
scammer may even try to
charm the victim – they are
very convincing liars. They will
attempt to acquire personal
details from you, such as your
name, address, bank account
details and more.
How to avoid a scam
Whilst we cannot guarantee
that scams can be avoided,
you can keep the risk to a
minimum by sticking to the
following guidelines:
• Never divulge your personal
information to anybody you
do not trust
• Speak to a trusted friend or
family member before replying
to any communications

Information
15
Never divulge your personal information to anybody you do not trust
• Do not trust anybody who
says you have won a prize or
inherited money
• Do not call any phone
number which says you can
claim a prize
• Do not send money or
anything else to help claim a
prize
• If you are worried that you
may not be able to identify a
postal scam, ask Royal Mail
to re-direct your post to a
trusted friend or relative
• Sign up to the free
Telephone and Mailing
Preference Services, which
cuts down unwanted phone
calls, texts and mail
If you suspect that someone is trying to scam you, the first
!
thing to do is stay calm and assess the situation. If any of
your personal information has been compromised, it is prudent
to alert your bank and cancel your cards. Scams can be
reported to the Action Fraud line on 03001 232 040 and you
can also get advice from the Citizens Advice Consumer Helpline
on 03454 040 506.

16 Information
Staying Safe at Home
Fire safety in the home is a
serious consideration for both
you and your family,
particularly in the deafblind
community. Your home
should be a secure setting in
which you feel safe every day,
but unfortunately accidents
can happen.
Thankfully, government
statistics have shown a
downward trend of fire-related
incidents since 2003. This
comes as a result of improved
technology and more
importantly, increased
awareness of fire safety in
the home.
A basic daily home fire safety
check will take just a few
minutes and could one day
save your life.
Alarms
Your home should be fitted
with not only smoke alarms,
but also carbon monoxide
detectors. Carbon monoxide is
an odourless gas and exposure
can be fatal, so it is vital that
these devices are in place.
Remember to:
Looking through a gate at a house
• Ensure your alarm is suitable
for your individual needs,
such as a specialist hard-ofhearing
alarm system
• Test your alarm monthly and
replace batteries once a year
• Replace all alarms every
10 years
Disability aids and
communication devices
Always ensure your hearing or
visual aids are within easy
reach and that you can call for
help immediately in the event
of an accident. Ensure you can
do this by:

Information
17
• Keeping a cordless or mobile
phone in the bedroom, plus
a torch for emergencies
• Making sure all glasses,
hearing aids and mobility
aids are close to the bed
Good practices for
the home
You can also help keep your
home safe by practising good
habits each day. By helping to
clear obstacles and maintain a
safe, tidy environment, you
can keep fire risks to a
minimum. Each day, make
sure to:
• Clear any clutter from
stairways and doorways
• Close all doors at night-time
to prevent potential fires
from spreading
Additional safety measures
Whilst these practical and
simple steps will give you
peace of mind, you may also
want to try some additional
measures. Consider:
• Planning an escape route,
with at least two exits, to
use if the worst should
happen
• Obtaining a ‘Do It Yourself’
assessment pack from your
local fire station
• Asking a member of your
local fire service to carry out
safety checks in your home
A pair of spectacles on a coffee table
!
For more information on fire safety, get in touch with us
using the contact details at the back of the magazine.

18 Information
emergencySMS, Your
Voice-Free Emergency Service
emergencySMS is an
innovative service which
allows users to contact the
emergency services by
sending an SMS (text)
message without making
a call.
Set up in September 2009,
emergencySMS is part of the
standard 999 service and has
been specifically designed for
those with hearing loss or
speech difficulties.
In the event of an emergency,
the services will need to know
the same information as they
would during a call – that is,
WHO (Police, Fire, Ambulance
or Coastguard), WHAT (details
of the problem) and WHERE
(street names, landmarks etc.)
All messages will be
responded to within two
minutes. In the highly unlikely
event of no response, users
should text again.
To use the service you must
have registered first – so it is a
good idea to do this now. To
register, simply text the word
“register” to 999. This does
not have to be an emergency
– you will simply receive
instructions to follow. Your
local Community Engagement
Officer or volunteer can help
you to do this.
Remember, emergencySMS
works on all networks and
should only be used in an
emergency, for example
when:
• There is danger to life
• A crime is in progress
• Somebody is
injured/threatened
• There is a fire or people
are trapped
• There is trouble on the
cliffs or shoreline
• Somebody is missing at sea
For more information on
!
using emergencySMS in
the deafblind community,
contact us using our details at
the back of this magazine.

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Over 250 innovative suppliers
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Mobility test track and live demo arenas
It’s back and bigger than ever!
Register for free tickets at www.naidex.co.uk
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For sponsorship and exhibiting enquiries contact the team at 0117 930 4927

Bill’s Board
Welcome to
Bill’s column
Welcome to this quarter’s edition of Bill’s Board, where I’ll be
giving you some helpful tips on how to make your life a little
easier. This quarter I’ll be looking at specially-designed
microwave ovens, how to get the best from your rail journey
and how to acquire a long white cane to help you get around.
The Cobolt Speechmaster
The Cobolt Speechmaster
This handy 900-watt combination oven from Cobolt is ideal for
making home cooking that little bit easier. Cobolt Systems Ltd.,
based in Norwich, specialise in designing home appliances for
the blind and partially sighted and this combination oven
certainly fits the bill. It comes with two audio CDs and printed
material to help the user – one CD contains instructions for
use, whilst the other has recipe suggestions.
I tried this out and was thoroughly impressed. I could hear
what every key was for and the instructional CD was a great
help. At £299 per 900-watt model, this is a great investment
and really helped encourage my confidence and facilitate my
independence.
20

Travelling with confidence
Before you travel, make sure you plan well in advance. I would
advise visiting your local station to make yourself aware of the
facilities before you plan your journey.
If you have one, you could use
your Severely Sight Impaired
Card to receive a concession
on rail fares – this is far
cheaper than purchasing a
Disabled Person’s Railcard. You
can also save by booking
tickets up to three months in
advance. Be aware however
that you can sometimes only
attain these discounts at
staffed stations, so if you live
in a rural area you may want
to make alternative
arrangements.
Also, keep in mind that if you
travel with more than one rail
company, for example National
Rail and the London
Underground, it is a good idea
A London Underground train in
a station with its doors open
to ensure all staff are informed
of your condition and they
may be able to arrange an
assisted journey for you.
A red and
white cane
The long white cane
A white cane is instrumental in
making the lives of deafblind people
easier. A simple white cane
demonstrates that a person is blind,
whilst a cane with red stripes shows
passers-by that the user is deaf as well.
If you think you would benefit from a
cane, speak to your local social services
who will be able to advise you further
and make sure you get the right
training to ensure you are as safe as
possible when using your cane.
21

22 Information
British Wireless for the Blind
British Wireless for the Blind logo
At Deafblind UK we respect
and recognise the work of
many other charities around
Britain, particularly those who
share our cause in wanting to
improve the lives of those
affected by sight and hearing
loss.
It is for this reason that we’re
proud to share the work of the
British Wireless for the Blind
Fund, which can benefit
thousands of deafblind people
across the UK. The national
charity was launched in 1928
and provides specially adapted
audio equipment to those with
visual difficulties.
Currently, the British Wireless
for the Blind Fund is the only
charity in the UK which issues
radios that have been specially
designed for blind people. The
charity, based in Maidstone,
offers a variety of different
models which have been
tailored to meet blind people’s
needs. For example, they
feature a colour-contrasting
design and easy-to-use large
buttons.

Information
23
partially sighted. He or she
must also be a UK resident,
over the age of eight and in
receipt of a means-tested
benefit. Those who do not
meet these criteria can instead
apply to buy a radio from
sister company BWBF Direct.
Dawn Parkinson with her
Concerto 2 radio
The current models on offer
are Concerto 2, Duet 2,
Sonata Plus+, Play and the
R9928. These range from
simple DAB radios to
multimedia players with a CD
player, tape deck, USB and SD
card slots, as well as an
internet audio player. The
majority of the sets are
manufactured by Roberts
Radio, guaranteeing crystal
clear sound quality for both
local and national radio
stations.
In order to qualify for the free
loan of a radio set, the user
must be registered blind or
The British Wireless for the
Blind Fund strives to be at the
forefront of audio technology
at all times. This means
responding to the changing
needs of technology, as well as
investing in research and
development to ensure the
sets provided can suitably
equip people for the future.
Dawn Parkinson, who uses a
Concerto 2 radio, says: “My
radio is very good. I like the
yellow buttons as they are
tactile and it’s easy to use. I
listen and it’s so crisp and
clear – when you put a talking
book on it’s like someone is in
the room with you.
“When you have a radio and
books to listen to, it makes a
big difference to your life.”
!
To find out more about British Wireless, phone
01622 754757 or go to www.blind.org.uk

24 Information
Accessibility at Wrest Park
©English Heritage
A view of the house at Wrest Park
Since 1983, English Heritage
has been providing accessible
tourist attractions which can
be enjoyed by people from all
walks of life. This countrywide
charity manages the National
Heritage Collection together
with more than 400 of
England’s best known
historical buildings,
monuments and heritage
sites. Among these, Wrest
Park in Bedfordshire provides
a fascinating day out and
offers a number of amenities
for deafblind people.
An adventure through
three centuries
Wrest Park offers its visitors a
walk back through time, with
design inspirations from three
centuries. Located in Silsoe,
Bedfordshire, the Grade 1
listed country house is one of
the only examples of 19th
century English architecture
following the style of an 18th
century chateau. The main
attraction of Wrest Park
however is its vast offering of
formal garden landscapes
which date back to the 17th

Information
25
century. Every piece of Wrest
Park’s incredible history is
brought to life by its wealth of
on-site accessible facilities.
For the hard of hearing, Wrest
Park offers portable hearing
loops, audio tours and
additional audio tours for
younger visitors. In the
exhibition area guests can find
out more about the history of
the property with a short film
which also contains subtitles
and an audio transcription if
required.
For a more tactile experience,
deafblind visitors are invited to
touch the gardens’ wide
variety of ornaments and
sculptures, as well as the
surrounding trees, roses and
wildflowers. Group tours can
be taken at £2 per person and
guide dogs are catered for
with water bowls.
©English Heritage
A view of the garden at Wrest Park
With facilities for disabled
visitors, adults and children,
there truly is something for
everyone at Wrest Park. For
more information on this
English Heritage attraction,
visit www.englishheritage.org.uk.
What’s on a Wrest Park this Spring?
Wallpaper Room Tours –
Sunday 5th March
Enjoy a rare tour around the
mysterious Chinese Room
(maximum 12 guests).
Wrest Winter Wonders
Tour – Monday 6th March
Closed to the general public,
the Wrest Winter Wonders
Tour explores the incredible
Archaeological Collections
Store.
Saturday Archaeology Club
– Saturday 11th March
Ideal for 8-16 year olds, this
exclusive club will teach the
little ones how to become a
conservator for the day.
St George’s Festival –
Saturday 22nd April –
Sunday 23rd April
Join in the St George’s Day
celebrations with Georgian
ladies, knights and Roman
soldiers.

26 Member Spotlight
A Celebration of the Seasons
Deafblind UK
member Di
Wade is
sharing her
talents with
her poetry
Di Wade
anthology, A
Year in Verse.
The book chronicles Di’s life
using the four seasons as its
central structure, looking back
on Di’s fondest memories
using nature as its inspiration.
Di, who suffers from Antley
Bixler Syndrome, says:
“Though I am registered blind,
severely hearing impaired and
could not smell a skunk at 10
paces, I have long considered
it my bounden duty to shatter
every stereotype associated
with my ‘afflictions’”.
A Year in Verse is a testament
to the long and fulfilling lives
that can be enjoyed by
deafblind people and reminds
us to enjoy the simpler things
in life – as Di calls it, “a
celebration of the sights,
sounds and scents of the
seasons”. Di is a passionate
A Year In Verse
sports fan who loves to travel,
and invites her readers to
“walk with me from my native
Blackpool through all the
wonders of the seasons in
verse.”
Edited by Trudy Salandiak, a
digital communications and
social media professional, A
Year in Verse is available
digitally and in print and
comprises 10 years of hard
work and creativity. To
purchase your copy, contact
diwadepoetry@gmail.com.
Part of the proceeds will be
split between Guide Dogs for
the Blind and Deafblind UK.
!
Look out for more about Di and some of her poems in the
next edition of Open Hand.

Member Spotlight
27
Living in a Box
enjoyable and prosperous life.
Keri Chambers at her graduation
Every one of our members has
a story to tell, but there are
few stories as inspiring as that
of Keri Chambers who has
chronicled the challenges of
her everyday life in a new
book, Living in a Box.
Keri’s autobiographical memoir
recounts the tale of when she
was first diagnosed with
Didmoad, or Wolfram
Syndrome, and how she has
come to adapt her lifestyle to
cope with this complicated
condition. The story describes
in nostalgic detail how both
Keri and her brother, Alex,
were diagnosed in 1992 when
Keri was just five. Keri lost her
hearing and sight aged 14, but
she has not let the condition
stop her from living an
Living in a Box takes the
reader through the trials and
tribulations of this rare
condition and gives an
intimate account of Keri’s
relationship with her family, as
well as just how much she has
achieved whilst living with this
disability. Keri says: “I was
inspired to write about myself
to let everybody know what I
have been through, what help
is out there and how I haven’t
let my disability stop me.”
Keri’s book is on sale today,
priced at £6.00. Hard copies
can be purchased from Keri
personally or at Amazon and
Morley’s, with all proceeds
going to Wolfram UK.
Living in a Box

28 Member Spotlight
Technology and Me
Molly’s journey with
technology began in infancy,
when she started to wear a
hearing aid aged 18 months.
Throughout junior school, as
technology progressed, her
hearing aids became more
sophisticated and Molly felt as
though they were part of her,
along with her radio aid,
helping her to filter out
extraneous noise.
Molly Watt
“I cannot imagine my life
without technology,” says
Molly Watt, a Deafblind UK
member, Accessibility and
Usability Consultant and
social media superstar
from Berkshire.
Sadly, life became more
difficult for Molly at senior
school. At age 12, she was
diagnosed with Usher
Syndrome and her hearing
and sight began to worsen. As
a result of bullying and lack of
understanding from her peers,
Molly isolated herself –
something for which she is
grateful today as it gave her
the chance to learn about
assistive technology.
In Molly’s teenage years her
parents gifted her a Macbook
which would prove to be
instrumental in shaping her
lifestyle for years to come. It
had built-in assistive

Member Spotlight
29
struggling to learn with the
limited options available.
Molly Watt using a tablet computer
technology, allowing Molly to
research her condition further.
She also created a series of
Usher Syndrome awareness
videos which led her to win the
Sense Young Deafblind Person
of the Year in 2010, aged 16.
By the time Molly got to
college, she was equipped with
an iPhone and a Kindle too.
Molly says her college had a
“can-do” attitude and she and
her guide dog Unis were
welcomed by her peers.
Unfortunately, despite her
accessible learning in college,
this did not carry on when she
reached university and she
eventually chose to leave after
Instead, Molly dedicates
herself to fighting for better
accessibility and regularly
speaks publicly about her
cause. She now has a blog
detailing the latest finds in
technology, for example, the
highly accessible Apple Watch.
Her blog has gone viral and it
is with this new-found internet
fame that Molly managed to
discover GN Resound, who
produce Linx2 smart hearing
aids. Today, as a result of this
technology, Molly is able to
connect her devices, hear
clearer sounds, communicate
in small groups and hear and
speak on the phone.
Thanks to today’s huge
advancements in assistive
technology Molly is now a
self-employed Accessibility
and Usability Consultant.
“I shudder at the thought of
where I would be without my
‘enabling toolkit’” says Molly.
“I believe these should be
available to everybody who
would benefit as much as me”.

30 Member Spotlight
Fitness Fun at Rainbow Court
tennis and boccia. Service
users are also encouraged to
make the most of the facilities
on offer at Rainbow Court,
such as playing outdoor games
in the garden, whilst Vivacity
also bring their own
equipment such as handbikes.
Matt Taylor with Marshall
As part of our on-going
commitment to the welfare of
all our members, we offer
monthly exercise classes to
residents of our assisted living
accommodation in Rainbow
Court, Peterborough.
These sessions are run by
independent not-for-profit
organisation Vivacity, which
manages culture and leisure
facilities around the
Peterborough area on behalf of
the local council. Exercises on
offer include a variety of sports
such as archery, curling, table
The classes have been swiftly
gaining popularity since they
first began. They have
received great feedback from
Rainbow Court’s service users
like Marshall (pictured) who
told us he thoroughly enjoys
the sessions.
Matt Taylor, Sports
Development Officer at
Vivacity, said “The exercise
classes form part of our
inclusive sports outreach
project where we give people
the chance to try some
sports and exercise on offer
in the city”.
“This is particularly good for
groups who haven't got
regular transport to attend
community sessions or service
users who would rather try
things for the first time in a
familiar setting.”

Member Spotlight
31
Meet Eleanor, Deafblind UK
Member and Volunteer
Deafblind UK member, Eleanor,
kindly volunteers her time to
carry out our Wellbeing calls.
What does your role at
Deafblind UK involve?
My role as a volunteer is to call
other DBUK members to wish
them a happy birthday - we
usually have a bit of a chat
too! I type up a report of the
calls I make and then send it
to DBUK. When they receive
this report one of the other
volunteers reads it and then
they add it to the database so
there is a record of the call.
out much. I feel that when
they receive a call from me it’s
really appreciated.
What have been your key
achievements during your
time at Deafblind UK?
Although I have not been
doing it very long, I am proud
that I am able to be an
inspiration to others despite
my sight and hearing
difficulties. My disability does
not hold me back!
How long have you been
involved with the Charity?
I have been a volunteer with
DBUK since April 2016 and I
am also a member! I am fully
blind and have digital hearing
aids which help me to hear.
What do you most enjoy in
your role?
I enjoy chatting to the
different members and find it
rewarding to call someone
who might be isolated or living
on their own and cannot get
Eleanor Ridgeway

32 Member Spotlight
Meet Pratima
When Pratima was just a child,
her father sadly passed away,
leaving behind a wife, two
daughters and a son. Mrs
Patel’s mother would go on to
bring up her children alone,
which led Pratima to
understand the true value of a
loving and supporting family.
Pratima’s letter to Deafblind UK in
December
One Open Hand reader who
knows the true value of family
is Mrs Pratima Patel, who has
enjoyed the features and
articles in Deafblind UK’s
quarterly publication since
2014. Born in Kenya in 1955,
Pratima had an enjoyable and
fruitful education together with
her siblings, but she would
soon learn that she would
have to grow up fast after a
tragedy which sent
shockwaves through her
family.
In 1978, things were looking
up for Pratima when she
married the love of her life,
Mirjay. The couple had two
sons and one daughter and
Pratima says the family
enjoyed a happy life together.
However, as she learned,
history would soon repeat
itself when Mirjay was taken
from her suddenly after
suffering from a stroke.
Pratima was left to bring up
three children and would take
the life lessons learned from
her mother as an inspiration.
Sadly for Pratima, she too was
afflicted by health problems
and suffered from a stroke, as
well as eye and heart
problems. Although she had
many operations, in 2014 she
was declared blind in one eye
and her hearing also began to
deteriorate.

Member Spotlight
33
Today, Mrs Patel lives with her
two sons and daughter in
Croxley Green,
Rickmansworth. She would not
be where she is today without
the love and support of her
children, who look after her to
ensure she enjoys the same
freedoms as they do. She
says: “I am very proud of my
girl and my two sons. I am so
lucky to have good children,
who support me every day.”
A mug of coffee next to a vase of flowers
As a keen subscriber of Open Hand magazine, Mrs Patel is a
!
proud member of Deafblind UK and regularly enjoys
activities with deafblind people in her local area. She wrote to
us in December 2016 to tell us how much she enjoys Open
Hand magazine’s articles and features and we felt compelled to
tell her story.
Mrs Patel is living proof that those living with deafblindness can
enjoy the same opportunities in life as those around them,
particularly with the loyal dedication of a strong family network.

34 Member Spotlight
Meet John – the
Paraclimbing Champion!
becoming a long-distance lorry
driver or joining the army, but
little did he know that nearly
30 years later, he would
become a climbing champion.
John Churcher scaling a climbing wall
Climbing a mountain is a
highly commendable
achievement for anybody,
but for John Churcher it
was a dream he never
thought possible.
John, who has been a
Deafblind UK member for
more than 10 years was
diagnosed with Usher
Syndrome in 1987 when he
was just a teenager. At the
time he had aspirations of
Unfortunately for John, he
could not fulfil his childhood
dreams due to his rapidly
deteriorating sight and instead
he became a carpenter, a job
he would hold until 1992. He
also has a daughter, with his
wife Anne. After retiring, he
became a stay-at-home father
and would regularly do the
school run with the help of his
guide dog, Annie.
It was not until 2010 that
John’s life would change
forever when a friend invited
him to join a climbing club.
Before long he was hooked
and after two years he began
to seek more adventurous
climbs by entering
competitions. In 2013 he
came second in a British
Mountaineering Council
climbing competition, allowing
him to climb internationally.
One year later he attended the
World Championships in the B2

Member Spotlight
35
Seeking bigger challenges in
2015, Mark’s goal was to take
a visually-impaired climber up
the Eiger. The two worked
together on a rigorous sixmonth
training schedule.
Finally, on Sunday 26th July
2015, John realised a dream
he could never have imagined.
With just three per cent vision,
he became the first blind
person to summit the Eiger.
John says that he felt “totally
elated” and enjoyed the
challenge of not only the
climb, but the entire project,
including sourcing support,
finances and equipment.
John Churcher at the summit of The Eiger
Category for Visual
Impairment, placing third, with
his sight guide Mark McGowan.
John has been reselected for
team GB this year and wants
to be involved in International
Paraclimbing Competitions.
Deafblind UK are supporting
John by looking for a specialist
volunteer to drive him to
climbing centres and train to
be his Belayer and sight guide
(holding the end of the rope
and telling him where the
holds are).
If you or somebody you know in the Birmingham area is
!
willing to step up to the challenge, please get in touch with
Deafblind UK using our contact details on the back page.

36 Member Spotlight
Meet Vijay, a Deafblind Digital
Support Ambassador
Vijay (right) helping Deafblind UK
members to use digital technology
Meet Vijay, our most recent
‘Digital Champion’ who is now
using his digital skills to teach
other deafblind people about
accessible technology. Vijay
explains how technology has
always played a central role in
his life:
“There has always been a lack
of technology support for
deafblind people, but if you
are keen, interested and have
the right support in place you
can learn quickly!”
Vijay’s philosophy echoes the
ethos of Deafblind UK’s new
digital project ‘The World at
their Fingertips’. Kindly
supported by the Big Lottery
fund, the digital initiative aims
to introduce the benefits of
mobile technology to as many
members as possible.
Deafblind digital support
ambassadors (DDSA’s), like
Vijay, are central to this goal
and play a vital role in the
project’s success.
Vijay has a desire to reach
more deafblind people. He
now extends his digital
support to include one-to-one
outreach visits, offering an
amazing source of inspiration
and support to other deafblind
people who are interested in
embracing their own digital
journeys.
The Big Lottery Fund logo
If you are interesting in becoming a deafblind digital
!
support ambassador then please contact us using the
details on the back of this magazine.

Chat with other
members
Would you like to get in touch with other
people with a dual sensory loss for a friendly
chat and companionship? If so, we would
love to hear from you.
We believe that no one should feel lonely or isolated. Many of our
members say they would like to speak to other people who have
the same disability. If you would like to be connected with other
people either on the phone, email, Skype, Facetime or via other
channels, then contact us using the details found on the back of
this magazine and we may be able to put you in contact with other,
like-minded, DBUK members.

38 Member Spotlight
Poems by Margaret Royles
Grandchildren
Grandchildren are a treasure,
They fill your house with glee.
It really is a pleasure
When they come round for tea.
Two children sitting on a sofa
with a dog in between them
Margaret, known to many
as Maggi, is a loyal
member of Deafblind UK
and regularly attends the
support group in Rhyl to
socialise and take part in
activities. When she’s at
home she enjoys writing
poetry and has kindly sent
some to share:
If you have a piece of
!
creative writing or if you
would like to write a guest
article, please get in touch
with us, using the details on
the back of this magazine.
They’re always asking questions
About who, what, where or why?
Amazement in their expression,
When you give them a reply.
Your worries you can’t express
When they go out to play;
Sadness turns to happiness
When you kiss their hurt away.
From babies through to teenagers,
They really have the knack
Of not seeing any dangers,
So it’s nice to hand them back.
They fill your home with laughter
And your heart is full of love;
Forever and hereafter
They’re the ones you’re mindful of.
The house is still and quiet now,
They’ve all gone home, you see;
Well never mind the riot
‘Cause they’re our eternity.

Member Spotlight
39
No Stone Unturned
Deafblind UK member Patrick
Roberts has certainly done his
bit for local communities over
the years. Registered severely
visually impaired in 2009,
Patrick has never let his
condition stop him from
achieving his dreams and
throughout his lifetime he has
touched the hearts of people
from all walks of life.
As a professional building
services design consulting
engineer with 35 years’
experience, Patrick has his
fingers in many pies. He is
passionate about the arts and
is a Trustee for Extant –
Britain’s leading professional
performing arts company for
Blind and Partially-Sighted
performers.
Based in London, Patrick is
also a volunteer at his local
Vauxhall and Streatham
libraries, helping to teach
deafblind people to use
accessible technology and
audio books. He supports St
Thomas’ Hospital and is also a
trustee for Transport for All.
His work for TFA includes
identifying challenges for
disabled pedestrians and
Patrick Roberts in front of a bookcase
with his dog
providing effective solutions
for them whilst using Transport
for London.
As if that wasn’t enough,
Patrick has also been a coopted
School Governor and
Manager of a non-league
football team, whilst his
engineering work has seen
him working with acclaimed
architects such as Lord Forster.
Patrick’s on-going community
work is a testament to the
strength of those with visual
impairments and he serves as
an inspiration to us all.

40 Features
Did you know about…
our holiday caravan?
facilities including indoor and
outdoor pools, a fitness suite,
a bowling alley and more. The
caravan is also fitted with
amenities such as a gas
cooker and fridge, though
members should be aware
that the shower is not suitable
for wheelchair users.
The Deafblind UK holiday caravan
Here at Deafblind UK we offer
a wide range of services to our
members, but did you know
this also includes a free
holiday in our caravan?
Located in Great Yarmouth,
Norfolk, this lovely six-berth
caravan is available for stays
of one week at a time to all
Deafblind UK members. This
cosy holiday getaway offers a
master bedroom with a double
bed and en-suite, plus a twin
bed suitable for children or
small adults. For extra guests,
there is also a double bed in
the lounge area.
The caravan can be found at
the Haven Holiday Village in
Hopton, which offers fantastic
Available from April to October
and weekends during
November, all members can
reserve a stay free of charge.
For more information on
booking your stay, get in touch
with us using the contact
details on the back page.
The beach nearby the Deafblind UK caravan

Here for
you to
talk to
Do you, or does someone you know need
guidance or emotional support?
The Deafblind UK Information & Advice Line is a free service and
we are always happy to answer your questions or concerns.
Our trained volunteers can give you practical and emotional
support, from giving advice on where to find help to resolve a
problem, to simply being there for a friendly chat. We will always
be here for you to talk to.
Call one of our volunteers on
0800 132 320
or email info@deafblind.org.uk
www.deafblind.org.uk
Registered Charity No: 802976

42 Features
Raising a Deafblind Baby
in the USA
A baby’s feet wrapped in a white blanket
A less common form of
deafblindness occurs when an
individual is born without sight
or hearing and has to rely
solely on his or her tactile
experiences to learn and
develop. This was the case for
Clarisa Vollmar, born in
Wisconsin in 2015. We spoke
to her father, Justin, about
raising a deafblind child in the
United States and raising
awareness of the condition.
“Like every other parent, we
were shocked,” says Justin.
“Then we cried but we
immediately picked ourselves
up and were determined to try
to be the best parents for
Clarisa.” Like their daughter,
both Justin and his wife are
deaf, as are their other three
children. Justin and Rachel
met at university and both
have Waardenburg Syndrome.
Justin admits that raising a
deafblind child has presented
him with a whole new set of
challenges as he has had to
“throw himself into the
deafblind world.” To
communicate with their

Features
43
daughter, Justin and Rachel
use American Sign Language
modified for tactile use, so for
example, to sign “Daddy” they
will tap on Clarisa’s forehead,
or sign “milk” by squeezing
her forearm. Whilst she has
not quite grasped the concept
of communicating like this just
yet, Justin explains that she
does respond to their signs,
for example opening her
mouth for a bottle.
Raising awareness
Though there are governmentfunded
deafblind projects
through America, Justin says
that some states’ projects are
better than others. In the
United States today, more and
more people are beginning to
learn about “Pro-Tactile,” a
method of communication
which relies upon touch.
Despite this Justin fears that
some people, particularly
university students, are
suffering from the social
stigma associated with
deafblindness. He is confident
for his baby’s future however
and says that the pair have
received an overwhelming
response to Clarisa’s plight on
social media. “Clarisa has won
many hearts,” says Justin.
Clarisa’s Facebook page
“She is a very strong-willed
child; she will communicate
her dislikes, anger and wants.”
For all the difficulties of raising
a deafblind child, Justin admits
that he would not change a
thing. “The best part about
being Clarisa’s dad is that
she’s a daddy’s girl!” he says.
Clarisa is also blessed with
three loving siblings, who
equally love to communicate
and play with her.
The next few years may be
challenging for the Vollmars,
but with increased education
throughout America and the
support of a loving family
Clarisa can look forward to a
prosperous future.

44 Meet the Team
Jo Richards
Jo Richards
Hello I’m Jo Richards and I
have recently joined the
Deafblind UK team at the start
of this year as Senior
Community Engagement
Officer for East Midlands,
Yorkshire and Essex.
Prior to DBUK I worked in the
private care sector; I have
sound knowledge in adult
social care and how the
system works. I also have 10
years experience in event
planning and business
administration including
finance.
My current role is to ensure
that our existing members
have easy access to the
support that they need. This
involves assessing member’s
support needs, signposting
and taking calls on the
Information and Advice Line. I
also run groups in Bury St
Edmunds, Peterborough and
Huntingdon and am looking
forward to spending time
observing other Community
Engagement Officers and
visiting social groups around
the country.
Being a busy wife and a mum
to three boys we find time to
get out and about sight seeing
on coastal walks or city
breaks. I enjoy picnics,
organising family gatherings,
antique fairs and collecting
pottery so there is always
something that interests me.
I’m excited about the future
and hope to build relationships
with DBUK’s existing and new
members. I wish you all a
positive and inspiring 2017.

Meet the Team
45
Daniel Webster
people in an advisory capacity.
I bring with me the skills of
adjusting myself to facilitate
communication and can
empathise with the barriers
that deafblind people face. I
have an excellent
understanding of the effects
that isolation has on certain
people and I am passionate
about raising awareness and
educating people to remove
these barriers and improve
access.
Daniel Webster
My name is Daniel Webster,
and I have recently joined
Deafblind UK as a Community
Engagement Officer in Essex.
My role is to deliver services to
DBUK members in Essex to
access support, tackle isolation
and meet other members.
As a Deaf person myself I
have spent the past 10 years
working with other Deaf
I find it extremely rewarding
to be able to support the
people I do and watching the
changes occur, especially when
things are changing for the
better and removing the
barriers out there.
When I am not at work, I like
to run at parkrun every
Saturday (although I have not
been for a while!) with a view
to entering a marathon one
day. I am also taking ice
skating lessons!

46 Meet the Team
Barbara Burnett
led to me change my career
and I took the brave decision
to move into the charity
sector, working for causes that
I believed in and it was the
best decision I have ever
made.
So, 20 years on, this is why I
still find my work an absolute
pleasure. I am very lucky to
do a job that I love and one
that helps make a real
difference.
Barbara Burnett
I joined Deafblind UK as the
new Community and
Individual Fundraising
Manager in the New Year and I
am so pleased to be here.
I started my career in
fundraising, as many do,
through volunteering for a
cause I passionately believed
in. It was this experience that
I have had the privilege to
work for some amazing
organisations such as Guide
Dogs, Scope and Sue Ryder
Care as well as some smaller
charities, but Deafblind UK has
always held a special
attraction for me. This is due
to the work that it does, the
way that it does it and the
difference it can make - so the
opportunity to join the
Deafblind UK fundraising team
and help build the community
fundraising future was almost
too good to be true.

Fundraising Update
47
Community Fundraising;
what’s it all about?
Community fundraising is all
about encouraging individuals
and groups within a
community to support us. It
can involve extreme
challenges such as running a
marathon, or perhaps a
gentler, calmer, sponsored
walk. It could be volunteering
to help us at a fundraising
event, or to take on a personal
sponsored challenge such as
giving up chocolate for a
month (which I have to
admit, would be a serious
challenge).
The variations are so
wonderfully wide that there
really is something for
everyone and we already have
some amazing fundraising
supporters who have gone
above and beyond in their
fundraising for us.
your teeth flinging yourself out
of a perfectly good aeroplane
(although we are so grateful to
those who do!)…. No, it can be
something as simple as being
aware of our needs, letting us
know if you hear of an
opportunity or perhaps
suggesting us as a charity if
you happen to be talking to
someone who might be
interested in volunteering
themselves.
So please be aware and share.
We would like to ask you to
think of us if you come across
any fundraising or volunteer
opportunities in your day to
day life and share your
opportunity by contacting us
using the details on the back
of this magazine.
Best wishes,
These wonderful people have
jumped out of aeroplanes,
abseiled down towers, run
marathons – and stood outside
in all weathers, collecting and
raising sponsorship for
Deafblind UK.
But it’s not all about gritting
Yummy! A bake sale to raise money for
Deafblind UK

How can we help you?
Information & Advice Line
A free phone line manned by
trained volunteers who can give you
emotional support and practical
advice, call them on: 0800 132 320
Community Outreach
We have a trained team of outreach
officers who can provide face-toface
support at your home.
Advocacy Service
We can help you resolve personal
issues such as those relating to
benefits, homecare support and
access to health services.
Companionship
We can match you to a volunteer
who can provide companionship,
light support at home or help you to
get out and about.
Social Groups
A regular get together where you
can meet with other DBUK
members, trained volunteers and
staff to enjoy activities and outings.
Digital Support
Our digital inclusion service teaches
you how to use accessibility
features on tablet computers and
other technology that can help you
on a daily basis.
Holiday Caravan
As a DBUK member you can
enjoy a week’s stay in our
accessible holiday caravan in
Hopton (near Great Yarmouth) for
free! Please get in touch to check
availability and to book.
If you would like to access any of the services we offer please
contact us using the details below.
The next edition of Open Hand will be the summer edition,
published in June. We welcome guest articles so if you have
something you would like to include please send it to
marcoms@deafblind.org.uk.
We will either include it in Open Hand Summer or save it for a
future edition.
Contact us
Deafblind UK, National Centre for
Deafblindness, John and Lucille van
Geest Place, Cygnet Road,
Hampton, Peterborough, PE7 8FD
Tel/Text phone: 0800 132 320
Fax: 01733 358 356
email: info@deafblind.org.uk
www.deafblind.org.uk
DBUKCharity
@DeafblindUK
Registered Charity No: 802976
Company Reg No: 2426281