Openhand48pp(Winter 2017)web

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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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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

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