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PERSONAL ACCOUNTS OF LIVING WITH SENSORY LOSS IN 2019 Produced in conjunction with Local Authority Workers Deafblind Interest Group (LAWDIG) 2019
PERSONAL ACCOUNTSOF LIVING WITH
SENSORY LOSSIN 2019
Produced in conjunction with Local Authority Workers Deafblind Interest Group (LAWDIG) 2019
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Contents
WITH THANKS
FOREWORD
UNDERSTANDING DEAFBLINDNESS - DBUK
SENSE: About us
Deafblind Estimations 2019 - 2029
SUPPORTING INDEPENDENCE THROUGH VISION REHABILITATION
PERSONAL ACCOUNTS
FROM SERVICE USER TO SOCIAL WORKER - Mike Brace
Terry Hornbuckle
Dr Howard Leicester
Justin Wright, Kathleen Fairchild
ONE GIRL AND HER DOGS - Rose
A DAY IN THE LIFE OF A REHAB WORKER - Tracey Cross
Amelia Rose Jefferies, Sharon Mwanza
Clark Mullen, Michael Bennet
Leila Touak, Joanna Martin
I WOULD RATHER LOSE MY HEARING THAN MY SIGHT
- Hazel Lacey
E.S.
DO I WANT MY SIGHT BACK? - Rebecca Atkinson
Rebecca Atkinson, Trevor Ewan
THE FLAMINGO SOMBRERO HAT - Pauline Brown
Malcolm G.
Steve, Edward Setterfield
RAIN DROPS - Sarah Ahmed
Emily Brothers, Mr Derek Whale
SOHO AND SANDWICHES - David Perrin
CELEBRITIES WITH SENSORY LOSS
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3
4
5
6
7
8-36
9
10
11
12
13
14-15
16
17
18
19-20
21
22-25
26
27-29
30
31
32
33
34-36
37-38
The best and most beautifulthings in the world cannot be seen
or even touched-they must be felt with the heart.
-Helen Keller
WITH THANKSThe Local Authority Workers Deafblind Interest Group would like to thank everyone who has kindly agreed to share their experiences*.
We hope these stories will influence and enlighten decision makers, commissioners and the wider public on what it means to live with
sensory loss.
For one in four of us this could be our future.
Illustration by Sarah Harrison.
*Some submissions have been edited for clarity.
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SUPPORTED BY
LOCAL AUTHORITY WORKERS
DEAFBLIND INTEREST GROUP
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It is 42 years since delegates from 30 worldwide countries came together for the first official Helen Keller World Conference (HKWC). The international conference was different, as it was convened to provide opportunities for deafblind people to have their own forum to share their personal experiences with
others in similar situations from countries around the world.
The first delegates at the HKWC welcomed and embraced the United Nations Declaration of Human Rights and the Declaration of the Rights of Disabled Persons. The 9 Articles set out for deafblind people
to enjoy the universal rights that are guaranteed to all people by the United Nations Declaration of Human Rights to live as active members of their communities.
To expect that their capabilities and their aspirations to lead a normal life within the community and their ability to do so shall be recognized and respected by all. To have economic security and full access to
communication support. To engage in leisure time recreational activities, and “the right and opportunity to organize their own clubs or associations for self-improvement and social betterment.”
Most importantly, Article 9 of the Declaration states: “Deaf-blind persons shall have the right to beconsulted on all matters of direct concern to them.”
17 years ago, I and my colleague, as social workers with Deafblind People (under the sec 7) developed our first Guide Communicator service. Being part of a dedicated Community Sensory Social Work Team,
we advocated to uphold the rights of Deafblind people. We worked with people to help them live the lives they wanted, how they wanted.
Through the Care Act 2014, we are revisiting former ways of working. As with people who have alearning disability, who have recently seen the success of having a named social worker, to support
people to remain independent, be in control of decisions about their own future, achieve better outcomes and support them to live with dignity. We sensory workers knew the deaf and deafblind people in the
community and they knew us. Social workers and social care professionals are returning to relationship and strength based practice, focusing on having good conversations with people to help identify what is
important to them. We are moving away from the deficit care management model, and are welcoming the return of community social work. The Act 2014 specifically recognises Deafblind People, and as a sensory
worker, this is how I have always practiced. This is what we did.
For this book I interviewed David, who, when we first met over 15 years ago, was working as asecondary school teacher in a PHU. Soon after he was medically retired due to his health conditions.
However, his skills as a teacher meant that he was perfect to deliver sensory awareness training to council employees. Over the years I have learned so much from David and others, and we recently worked
together to develop a course on supporting people in the community with long term health conditions, funded by Health Education England. People with lived experience are the experts and have a lot to
contribute, if we open opportunities up.
My former team, like many sensory teams, was disbanded almost 8 years ago. There are few dedicated sensory teams now, but there continues to be a strong community of sensory workers, often lone-workers
in their organisation, who continue to support deafblind people and fight to uphold human rights.
Many years after I first attended, I revisited the LAWDIG group. I set the group a challenge to raise the profile of Deafblind people and they exceeded my expectations. That is why I am so proud of being a
sensory worker and of being associated with the development of this EBook. I have enjoyed reading the contributions and I hope you all will too.
Tricia Pereira
Co-Chair of the Principal Social Worker and Practitioner Development Lead for London ADASS
Foreword
A lady once came up to our stand at a low vision event. She had sight impairments and was wearing two hearing aids, indicating to that she was hard of hearing. She saw that we were representing Deafblind UK and said to me “wouldnʼt it be awful to be deafblind, those poor people!” What she didnʼt realise was that
she herself was actually one of nearly 400,000 deafblind people in the UK.
Despite common misconceptions, deafblindness actually means a combined sight and hearing impairment to the point where someoneʼs communication, mobility and ability to access information are impacted.
Deafblindness comes on a huge spectrum ranging from someone struggling to see and hear the TV right through to them not being able to see or hear anything at all. However, many people with deafblindness
are able to hear and/or see something.
Many people donʼt identify themselves as being ʻdeafblindʼ but are aware that they “canʼt see and hear as well as they used to”. It is important for us all to recognise the signs of sight and hearing impairments in
ourselves and in our friends and family - and to understand that support is available if we need it.
Dual sensory loss is a completely different condition to a sight loss plus a hearing loss. An easy way to think of this is to imagine hearing impairment as the colour blue and visual impairment as the colour
yellow. When the two sensory impairments, or in this case the colours blue and yellow, come together they become something new –dual sensory impairment or in this analogy – green; a totally new colour with
different properties.
Early signs of deafblindness include:
Realising that you may have a dual sensory impairment can leave you with questions and concerns. At Deafblind UK, we support people with any level of combined sight and hearing loss to carry on as normal. Sometimes this means advising people about a new household tricks and tips to make their life easier (such as using daylight bulbs, bump-on stickers or other basic equipment) or it might mean we show you how to
use accessibility features on an iPad so you can do your shopping online, for example.
Many of our services are free of charge and include practical advice and information; emotional support for you and your family; help with digital technology; use of our accessible holiday caravans; social
groups and companionship.
If you have any questions about combined sight and hearing loss or to find out what we can do for you, contact our team of experts on the details below:
Call: 0800 132 320Web: www.deafblind.org.ukEmail: [email protected]
Text: 07950 008870Twitter and Facebook @DeafblindUK
Understanding Deafblindness - DBUK
- Difficulty following conversations involving more than two people- Thinking that other people sound muffled or like they're mumbling- Having trouble hearing children and women- Feeling embarrassed to meet new people or avoiding social situations- Leaving post unopened- Persistently cleaning glasses, or difficulty seeing well with them- Hesitancy in sunlight, bright light, or low light, night
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No one left out of life.Life is best measured, not by days or years, but by moments.
Think about the little things youʼve enjoyed today. Perhaps making a cup of tea. Shared a joke with a friend. Gone for a walk with the family.
For those of us who are deafblind or living with complex disabilities, these every day moments can seem out of reach. But they donʼt have to be.
At Sense, we use all the senses to help people to communicate and experience the world around them. When communication is challenging, it can be incredibly isolating. But there are thousands of ways to
connect. Whether itʼs speech or sign, touch or movement, gesture or sound, art or dance – we help people to express themselves and be understood, no matter how long it takes.
Naturally, everybody who is deafblind or has complex disabilities faces their own particular challenges. From the youngest child who is learning how to communicate with her mum and dad; to the teenager who
is supported to socialise and make friends; from the adult who wants to live on in his own flat as inde-pendently as possible; to the older person who needs support to get out and about and stay connected to
their local community.
Our skilled staff offer personalised support through our centres, holidays and short breaks, or in peopleʼs own homes. We are here for every individual – providing early intervention for children, helping young
people get the right education, and offering supported housing and life-long learning opportunities.
The best possible startFive year old Annie was born deaf with severe visual impairment and epilepsy. At first, her parents were at a complete loss about how to support her and feared she would never be able to do anything for herself.
But with intensive support from a Sense Children and Family Support Worker – including, slowly and patiently, helping her to play and communicate - Annie is now a lively little girl who is the apple of her
parentsʼ eye.
A life of opportunity49 year old Tony is blind, has just a little hearing and has learning disabilities. For many years, he and his mother were very isolated and both became very depressed. Fortunately, a social worker referred him to our Sense Centre in Barnet, which offers all sorts of stimulating experiences – from rock climbing to cook-
ery – and his self-confidence and love of life have blossomed.
Life’s better when we’re all connectedChris has always been hard of hearing, but when she lost much of her remaining sight in her late sixties she
was devastated. “Itʼs such a lonely condition,” she says. Chris received regular visits from a SenseCommunicator Guide, who helped her to get out and about again, to join social clubs and recently to
attend a local gym so she can keep herself fit.
At Sense, we believe that no one, no matter how complex their disabilities, should be isolated, left out, or unable to fulfil their potential. After all, everybody deserves to take part in life and enjoy those meaningful
moments and connections that bring joy.
Connect with us and find out moreVisit us: www.sense.org.ukEmail us: [email protected]
Call us: 0300 330 9256 (voice)Text us: 0330 330 9256
Follow us on Twitter, Facebook, Instagram: @sensecharity
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AGE MALE FEMALE TOTAL
DEAFBLIND ESTIMATED: 2019 - 2029 -SENSE
0 - 19 18,020 5,048 23,068
20 - 69 76,785 45,090 121,875
70 + 105,183 174,817 280,001
TOTAL 199,988 224,955 424,944
0 - 19 18,331 5,169 23,500
20 - 69 80,238 46,417 126,655
70 + 120,492 190,894 311,385
TOTAL 219,061 242,479 461,540
0 - 19 18,519 5,228 23,747
20 - 69 81,940 47,062 129,002
70 + 129,989 201,188 331,176
TOTAL 230,447 253,478 483,925
0 - 19 18,648 5,266 23,914
20 - 69 83,838 47,860 131,698
70 + 153,860 229,145 383,006
TOTAL 256,346 282,272 538,617
2019
2023
2025
2029
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Supporting Independence for Deafblind People through
Vision RehabilitationThe Care Act (2014) radically changed the landscape for people who receive social care in England. The
scope of the Act is deliberately wide, general and - in some senses - open to interpretation, butdeafblindness is one of only two conditions (along with autism) where specific direction was given in law as
to how local authorities should support people with dual sensory impairment.
Aside from providing a clear definition of deafblindness and requiring every local authority to identify a senior manager with responsibility for deafblind service, much has, quite rightly, been made of the legal requirement to offer a specialist deafblind assessment. This assessment must be carried out by someone
who is, at least, trained to level 3 of the Qualifications and Credit Framework in deafblind assessment. Yet, one has to ask, what is the use of a high quality assessment if there are not the services to put in place
after the assessment? To put it another way, telling someone they need food is no good if you donʼt provide a meal. So in this context it is interesting that far less seems to have been made of the Actʼs
statutory duty for prevention.
PreventionIn general terms the Act requires services to be provided that “reduce, prevent and delay” the need for care and support. Paragraph 6.93 of the Actʼs statutory guidance suggests that, for deafblind people, prevention would be in the form of training and expertise in communication, one-to-one human contact,
social interaction and emotional wellbeing, support with mobility, assistive technology and rehabilitation.
Deafblindness can equate to loneliness and isolation. The route out of such loneliness and isolation is through learning new communication techniques such as appropriate hearing equipment, braille or
deafblind manual “sign” language. Rehabilitation here is about teaching the skills and confidence to get out of the front door, into a bus and down to the coffee shop, church or club. It is about regaining
confidence in a whole world of daily skills like using the phone or making a meal - things that sighted and hearing people take for granted. Vision Rehabilitation Workers (also known as Rehabilitation Officers
Visual Impairment – ROVIs) are the specialists who are qualified to teach these specialist skills (as well as assessments). It is potentially complex work, not without risks (and rewards). It can be challenging for those receiving the service, because it can take people out of their comfort zone at a time of personal
crisis, but the outcomes can be life-restoring.
Market ShapingThe Care Act also places a duty on local authorities to commission services to meet likely needs. As the
charity Deafblind UK points out, local authorities should take account of their Joint Strategic NeedsAssessment (JSNA) and the need for preventative services. In fact the Act also requires that local
authorities keep a record of the number of deafblind people in their area. Service commissioners should therefore consider the considerably growing number of deafblind people and their need for such specialist
support. The number of Vision Rehabilitation Specialist in the UK falls woefully short of the number required at present. After some years of decline, the numbers of such skilled professionals has stabilised and in 2018 a brand new Apprenticeship Standard was launched for the Vision Rehabilitation Worker
profession.www.instituteforapprenticeships.org/apprenticeship-standards/rehabilitation-worker-visual-impairment/
For more about the role of Vision Rehabilitation Workers and their role in preventative services, ADASSʼs position statement is valuable.
www.adass.org.uk/adass-position-statement-on-vision-rehabilitation-may-2016
Simon Labbett Chair of the Rehabilitation Workers Professional Network; the professional body for
Vision Rehabilitation Workers.
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PERSONAL ACCOUNTSof living with
SENSORY LOSS
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When I was blinded from a firework accident aged ten, I received fantastic support (as did my family) from a specialist worker for the vision impaired. In those days there was no choice but to be “sent” to a specialist boarding
school, so off I went.
Little did I know then that 40 years later I would retire from my work as a social work manager responsible for the provision of social work services to children in a London Borough. As Service Manager/Assistant Director I
had nowhere to hide when “rationalising” services and one of my proudest achievements is introducing a method whereby service users could
complain, be listened to, and importantly receive a response whether good, or bad!
Now I am retired I have gone full circle and am a service user again. I think I have become a grumpy old man! I feel annoyed that I am being forever surveyed but nobody ever seems to listen to my answers! I am Chairman of a voluntary society which, due to cuts, receives no funding
from the LA but we are increasingly providing support to users who cannot get a service from their Sensory team due to “lack of resources”.
Most people who lose their sight are over the age of 50 and at a point in their lives when they are comfortable doing the things they have done
since childhood. Then they lose their sight, cannot drive, feel inadequate, isolated and helpless, and desperately need support and help but at this crucial time in their efforts to rebuild their lives, the essential help is not
there!
From service user to social worker- and back again!
Mike Brace CBE DL – Havering, London
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I have Ushers Syndrome. My worst moment was being given mydiagnosis. I was in a dim room and had drops in my eyes so I could not see to lip read. I could not understand. The doctor seemed frustrated. He told me ‘you are going blind, there’s nothing I can do, here is a
leaflet’.
After I was diagnosed, at first I felt depressed. I didn’t want to connect with my family. I lost my driving licence and career as a hairdresser. I was bombarded with charities that wanted to help me, but I couldn’t accept what they were offering. As things deteriorated my home felt like a prison. Eventually I accepted that I need help. Judi, my guide dog, has made me feel so much better. I am not on my own fighting
anymore.
For me every day is different. If the sun is behind a car I can’t see it. I am dazzled by the white light in supermarkets. If it is dark or dull
weather I cannot see. My dark carpet sometimes feels like it is high and I am wading through a swamp. If it snows I experience glare from
it and the clouds. On a good day I can go out on my own. On a bad day I don’t trust myself.
I need time to process information and for my brain to try to fill the gaps that I cannot hear. However I don’t want to take too much of
people’s time. I don’t understand jargon. When people speak really slowly I find it patronising. I normally ask them to repeat what they are saying 3 times, and if I still can’t understand I give up. I prefer
email as I can take my time and enlarge it. I struggle with thetelephone as I find it echoes. I need time to get to know how someone
communicates and their voice, and then I have a good experience. I have this with my GP. People should ask me how I want and need
them to communicate.
Terry Hornbuckle – Sutton
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Last November, i was officially diagnosed with a biochemically identifiable genetic mutation affecting eyes, ears and the nervous system.
None of the genes behind Inherited Retinal Dystrophies were known in 1985 when I was registered solely as blind.
Male and having spent most of my 54 years at home in Kent, I was at St Andrews University when my sensory challenges became obvious.
I just about completed my degree in Physiology and Pharmacology before taking a conversion MSc in Computing.
Two lucky incidents made it possible for me to gain a PhD in IT applied to health ("Health Informatics") from City University London. The Department
of Health went online in 1995, making reports available on The Web, albeit in inaccessible formats. I also spotted that web pages would load intoMicrosoft Word and automatically convert into Word documents, thus
allowing me to complete my Thesis by formatting as simple web pages, tables and graphs.
I've been a university lecture, external examiner and even ran an academic department on Health Informatics at the Royal College of Surgeons of
Edinburgh. All that has been made possible by computers and the patience and kindness of family, friends and colleagues.
My most significant contribution to society, however, has been to make The Queen Smile. In late 2016, Her Majesty sent me a standard print letter
inviting me to receive an MBE in the 2017 New Year's Honours List. Since the invitation was likely to have been for the hard work by NHS England in introducing a requirement for all care providers to provide documents in
alternative formats and face-to-face support for those who need them (The 'Accessible Information Standard'), I wrote back accordingly to Her Majesty
- in braille with superimposed large print.
i received another letter, again in standard print, declaring in more formal language, that "Her Majesty did have a right good laugh".
Dr Howard Leicester – Kent
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I have been deafblind virtually all my life but do not let this stop me from having as normal a life as possible – I enjoy canoeing, sailing, martial arts
and walking. And I absolutely refuse to hide away at home in isolation living on benefits but hold down a full time job where I feel I’m making a contribution. Now no matter how good you are, getting into employment
with a dual sensory impairment is very difficult – I have read that only about 3% of deafblind school-leavers mange to get into work. I have a
degree in Accounting and Economics and with the right assistive software have no problem using a computer – but recruiters just aren’t interested
when they learn of your disability. It is usually ignorance and narrowmindedness on their part. Occasionally you’ll get lucky and find a recruiter who is more confident about disabilities and is willing to give you a chance
to show you can do the job.
Justin Wright – Wiltshire
I am 65 years old , deafblind and I run support group with Deafblind UK call Sensory Support Group, you can find us on Facebook, Corringham SSG.Myself and other struggle everyday with our sensory loss and we need to
be heard and understood how we are effected with our everyday life. Communication, independent and isolation are understudied. We need
assistive devises and we have travelling issues such as no talking buses, train , transportation to and from appointments, might that be hospital and
or doctors appointments and or airport, etc. Walking about with means of Guide Dog, white cane or red and white
cane, which I myself used, we face barriers, isolation and exclusion. Vehicles parking on pavement, cement post needs to be visualised, as they
blend with pavement, metal post also needs to be marked so it helps us know we have something in front of us, many times I've walked into a post and end up in hospital in A&E getting stitches, tree branches cut back to free us from danger, uneven pavement needs to be addressed, so often I end up
falling and hurting myself. More police are needed to protect our safety and from being harm by those that know we have sensory loss. Employees need to have a better understanding of our needs. We need your support.
We need to feel safe . We want to be independence like others.Thank you for reading my story
Kathleen Fairchild - Thurrock
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One girl and her dogs
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I was born myopic, had trouble at school and was bullied because of poor eyesight. I was born in an era when children didn’t have disabilities. I was classified as ‘a child with a problem’ and teachers didn’t seem to bother. It wasn’t until I was about 12 or 13 that I got glasses, if anything that made
the bullying worse as glasses were old fashioned ‘Milkybar Kid’ wire frames. At the age of 15 I tried to join the forces but I couldn’t get in. I tried various jobs and at 18 I went into agriculture as a farm worker but through
time my sight got worse. I went on the blind register in 1980 and had to leave my job in 1981. My first experience with social work was in Scotland; I was given a symbol cane and braille dominoes. I waited 9 years for long
cane training. The Senior Social worker for the blind told me he had acupboard full of equipment but didn’t believe in giving them out. I got long cane training from a woman called Jo who came up from Kent. I’ll always remember her name and what she did. She also suggested I applied for a
guide dog - I always thought you couldn’t if you still had some sight. I initially went through Social Services who told me you couldn’t just hang them up like a stick on the back of a door when you didn’t need them. In
1991 I sent in an application form to Guide Dogs and in September I trained with my first guide dog and never looked back. Social workers in Scotland said that now Guide Dogs have given you a dog they can look after you. I then moved to The Midlands and it was slightly better but still not great. I
then moved to Chelmsford, into sheltered housing which is classified asindependent living. When I moved here they put me in touch with welfare rights and adult social care. Adult social care put me in touch with Essex cares sensory service. I thought “here we go again, passing the buck”. How wrong I was! I explained some of the stuff I was having problems
with over the phone and got an appointment. The worker at Essex Cares arranged, through the GP, to get appointments with ophthalmology and
audiology as the hearing aids I had went out with the ark. After I got new aids I heard the birds sing again and I also got a wireless for the blind - an
all singing, all dancing type! They also went through how people in myposition could access communicator guides for hospital appointments which
has been a godsend. I was so impressed that when asked if I could volunteer I said yes, so I could give something back to them. I now
volunteer for both ECL and Essex council as an ambassador and have been a speaker for Guide Dogs for 27 years. I’m now on my 6th guide dog and have my independence back thank to Essex Cares and Guide Dogs, even
though I’m also severely to profoundly deaf as well now. I wear a personal loop system, have an Orcam, and a pager system for the home. I feel like I
came home when I moved to Essex because of the excellent support I’ve had. I think they should share their good practice with every Social Services in England. I’ve used all of their services and they are all excellent. I would
recommend anyone with sensory loss to come to Essex.
Rose
I work for a Local Authority as a Sensory Rehabilitation Worker, which means I support people who are Deaf, hearing impaired, sight impaired or have a dual sensory impairment. I am a qualified Rehabilitation Officer for the Visually Impaired (ROVI) and a Qualified Specialist Deafblind Assessor.
I love my role and working for a Local Authority and I work with some great people.
I start my day around 6.45, leaving home for the 45 minute journey into work, hoping that traffic will be on my side. I always plan to leave earlier
than needed to compensate for delays. Reaching work, and first things first, that all-needed cuppa is made. I like to get in earlier than some so that I can
catch up with and answer emails. My calendar is kept up-to-date and I check this for my day’s visits and meetings.
I generally aim to start visits around 10am and I head out for my first visit at 9.30am, equipped with the forms and information required for the days
visits. I keep a small kit in my car (Liquid level indicators, tasks lighting, non-slip matting, canes, signature guides) and this is replenished regularly.
My first visit of the day is a 58 year old lady (Bea) who has Autosomal
Recessive Retinitis Pigmentosa (arRP) which results in tunnel vision. arRP is a progressive condition and the tunnel vision will continue to deplete over time. Hearing loss is also often associated with the condition, but so far
hearing has remained within normal levels. I have been involved with Bea in the past and she has recently reconnected with me to become more
independent when accessing the community. Initially Bea felt that a guide cane would benefit her the most and we did training around this. However, Bea has found that she is missing kerbs and obstacles. This is the first visit to re-assess her mobility needs and we discussed use of a long cane. Bea had
also become isolated and lacked social connections and had becomedepressed with a negative outlook on life (Counselling was in progress). I
sat with Bea for a good hour just talking with her. I do feel it’s important to just sit and listen sometimes and I have had visit where this is has been the sole purpose of me being there. Bea had little motivation and daily tasks had also been put to one side. Together we set some goals which would include mobility training, travel training and accessing groups where Bea
can talk to others who have similar experiences.
A day in the life of a rehab worker
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My second visit was to complete an assessment for an 81 year old gentle-man (Fred) who had recently been registered as being partially sighted
with age related Macular Degeneration (Wet). Fred enjoys being independent and as he lives alone he is aware that he needs support to
accomplish this. Fred’s most pressing problem was continuously spilling hot water over the work surfaces and he was concerned about burning himself. Following assessments Fred agreed to have weekly visit to undertake daily
living tasks. However, as the management of hot liquid needed to beaddressed this was done on the same day. Fred was keen to access a one cup kettle but in the meantime he is now capable of pouring liquid safely using a liquid level indicator and tray to manage any spillages. Fred took
on board the importance of having things at hand and now has a workable environment around making a hot drink. During the assessment I discussed Charles Bonnet syndrome with Fred who said he often sees a child sitting in the armchair as well as flowers covering the floors. Fred felt he was “losing
it” but now feels much more able to cope with the experiences.
As I’m nearing lunch time I keep a snack and fruit in the car, as I won’t be going back to the office until after the last visit of the day. I’m meeting a social worker to complete a joint visit in relation to a young adult with
learning disabilities, who also has sight impairment. I finally get back to the office at around 3pm. I catch up with emails again
and start completing case notes from the day’s visits and start writing Fred’s assessment. The social worker on the last visit will raise a new
contact for a sensory assessment. And this will be picked up quickly as there is a very short waiting list.
I finish between 4pm and 5pm head home feeling that this was a good day, but the time I arrive home I generally try to leave any work related
thoughts at the car. I like to have a good work life balance.
Tracey Cross - Thurrock
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I wouldn’t wish this on my worst enemy. Years ago, my hearing got worse, then I had a cataract removed from my right eye. My eyes deteriorated
years after. If anything, I would rather go deaf than blind but BOTHhappened to me.
My eyesight is still worsening but unfortunately nothing else can be done. I just must cope with it. Family and carers are supportive, but they don’t
truly understand what I go through.
Amelia Rose Jefferies - Wiltshire
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We were very pleased to see you and S last week and thank you for all the things you have been organising for us. We have already sent off the
Attendance Allowance forms and we have checked and signed the reports of your visit and will post them back to you when we go out tomorrow.
Our gadgets arrived today and we were pleased to get the help of D, who installed them for us. T is delighted with the phone, with its big buttons, which is so easy to use and clear for him to hear without that distracting
whistle which our old one produced whenever it got near his hearing aids. The headset works very clearly in the kitchen, but as we anticipated,
linking it directly to the living room TV was not so easy.
These are things which it would not have occurred to us would have been available/useful and much appreciated.
I expect people with similar problems to T often tell you that however much you realise that the conditioning is worsening, it still comes as something of a shock when the official certification is given. The advice and counselling
which has followed on from this has been a great comfort and reassurance. It is good to know that we will not have to handle this alone and we both
greatly appreciate all that you and your colleagues are doing.
T also thanks you for finding contact information for him for 'running bud-dies' but I rather doubt he is going to take up the offer soon - he is very independent and insists that he is still enjoying the freedom of running
where ever the fancy takes him without being tied to someone else. This was more my idea than his and even tripping over some obstruction in the woods a couple of days ago and coming home bruised and bleeding has not changed his view. (Just a few scratches, he insists. Nothing serious).
Sharon Mwanza – Kent
PY is an advanced Braille user and has been willing to use his skills and knowledge to help others learn to use and understand the language.
On March 15th PY met PG at TBSE, Barnet to have their first Braille session together. PY had spent time at home creating learning documents containing
the Braille alphabet and numbers for PG to use.
PY using hand under hand support guided PG’s finger over the different letters and numbers, PG Comm Guide communicate the different letters on
her hand using deafblind manual and block to confirm.
PY also showed PG how to use a Perkins Braille machine and demonstrated via touch how to create and type Braille. PG also introduced a method of learning Braille to PY by using an egg box and ping pong balls which PY though was a very good way of making the Braille letter more tactile.
PY said he enjoyed passing on his knowledge and skills, and was veryimpressed with PG’s dedication and determination during the session. PG
thanked PY for his time and said she found the session very useful andenjoyable and looks forward to meeting again in the future.
Clark Mullen
Blind in my right eyeCentral vision in my left eye (1.5 metres)
Photophobia (sensitive to light)Since the age of 25 I began to lose my peripheral vision.Several tests and visits to Moorefield’s, laser treatment
Conclusion: Optic Nerve Damage.Loss of vision was a shock, but support of my fantastic Guide Dog Usher
(past 21 months), confidence boosted. Support of my wife Chris (my rock),I can achieve my dreams.
Comments about my Guide Dog: “Is he in training?” verbal directions from shop assistants, a minority of youths wanting to cut my dogs throat (others helped), people parking on pavements, to electric smart cars which I cannot
see or hear.2018 Tandem Sky Dive Guide Dogs
30th April my 63rd birthday, 100 mile hour zip wire for deafblind UK.My goal to support others, enjoy life and avoid obstacles!
Michael Bennett
P.Y. introducing P.G. to the language of braille
Life-changing journey
17
My name is Leila Touak I am 36 now, I am Deaf blind. I have no vision in my right eye and have got vision in my left eye. I had an operation in my right
eye in 1999. I became good at English when I start Hankwood school for the deaf. I started learning sign too. I am happy to have support from sense. I
heard about sense from my social worker. I like to have sense support. Growing up I found communicating with my Parents difficult as they did not sign. i went to Joseph Clarke school for the blind and vision impaired it was
hard because people there did not sign so i had to lipread. i have nice friends.
Leila Touak – Newham
I was inspired many years ago as a rehabilitation worker for the visual impaired when I worked with a deafblind individual. The hurdles were
large and the obstacles were great, but their passion for life wasimmense. So, these few words above just say it all.
Joanna Martin – Wiltshire
I cannot see the worldI cannot hear the worldMy world is complete
I feel the worldI touch the world
My world is complete
My family is my worldMy life is my world
My world is complete
18
I am not sure if people truly understand what hearing impairment is and what it means for that person.
I was once told the following story:Mr Blindman and Mr Deafman went out socialising one evening. Mr B left
his Guide dog at home and took his mobility cane with him. They both went off together to enjoy an evening of fun and were excited with the prospect of meeting new people. All was well and good and both were very happy.
Off they went by train. Mr D was able to read the timetables and Mr B was able to hear the loud speakers giving out up to date information. All was
well and good and both were very happy.
The platform was quite busy but Mr B was given a little bit more space. He was able to chat to other travellers and was also sometimes treated quite
differently as people recognised the white mobility aid. As they were together, fellow travellers tried to involve Mr D, but soon
gave up as it wasn’t easy to chat with him and keep a conversationflowing. Anyway Mr D had other things on his mind; he was not able to
hear the travel announcements, needed to use high levels of concentration, be aware of everything around him, keep his eye on the ever changing time table, have telepathic powers and pre-empt what other passengers were doing, did not hear the words “excuse me” and would often get
pushed out of the way by an impatient fellow traveller. But all was fairly ok and Mr D was still fairly happy.
The travel announcement told passengers that the now due train was going to arrive on a different platform. Mr B heard this, asked for help and some
very kind members of the public assisted him to the correct platform. All was well and good and Mr B was quite happy.
Mr D did not realise what was happening until he noticed a massevacuation of the platform. Not sure if he was now in an emergency
situation, he followed the crowd with his fingers crossed. Finally the Travel announcement board caught up with the Speaking travel
announcement and he realised it was just a platform change. Although now a bit unsettled Mr D was still looking forward to the evening.
They began the evening by seeing a Musical show at well-known theatre. Mr B loved it. He was ushered to his seat by a very kind usherette who
made sure he was comfortable and did not need anything. Whilst waiting for the show to start, Mr B was not able to read the programme but instead
chatted to other theatre goers, i.e asked about the show, how manyintervals were there, where the bar was.
“I would rather lose my hearingthan my sight”
19
I was born myopic, had trouble at school and was bullied because of poor eyesight. I was born in an era when children didn’t have disabilities. I was classified as ‘a child with a problem’ and teachers didn’t seem to bother. It wasn’t until I was about 12 or 13 that I got glasses, if anything that made
the bullying worse as glasses were old fashioned ‘Milkybar Kid’ wire frames. At the age of 15 I tried to join the forces but I couldn’t get in. I tried various jobs and at 18 I went into agriculture as a farm worker but through
time my sight got worse. I went on the blind register in 1980 and had to leave my job in 1981. My first experience with social work was in Scotland; I was given a symbol cane and braille dominoes. I waited 9 years for long
cane training. The Senior Social worker for the blind told me he had acupboard full of equipment but didn’t believe in giving them out. I got long cane training from a woman called Jo who came up from Kent. I’ll always remember her name and what she did. She also suggested I applied for a
guide dog - I always thought you couldn’t if you still had some sight. I initially went through Social Services who told me you couldn’t just hang them up like a stick on the back of a door when you didn’t need them. In
1991 I sent in an application form to Guide Dogs and in September I trained with my first guide dog and never looked back. Social workers in Scotland said that now Guide Dogs have given you a dog they can look after you. I then moved to The Midlands and it was slightly better but still not great. I
then moved to Chelmsford, into sheltered housing which is classified asindependent living. When I moved here they put me in touch with welfare rights and adult social care. Adult social care put me in touch with Essex cares sensory service. I thought “here we go again, passing the buck”. How wrong I was! I explained some of the stuff I was having problems
with over the phone and got an appointment. The worker at Essex Cares arranged, through the GP, to get appointments with ophthalmology and
audiology as the hearing aids I had went out with the ark. After I got new aids I heard the birds sing again and I also got a wireless for the blind - an
all singing, all dancing type! They also went through how people in myposition could access communicator guides for hospital appointments which
has been a godsend. I was so impressed that when asked if I could volunteer I said yes, so I could give something back to them. I now
volunteer for both ECL and Essex council as an ambassador and have been a speaker for Guide Dogs for 27 years. I’m now on my 6th guide dog and have my independence back thank to Essex Cares and Guide Dogs, even
though I’m also severely to profoundly deaf as well now. I wear a personal loop system, have an Orcam, and a pager system for the home. I feel like I
came home when I moved to Essex because of the excellent support I’ve had. I think they should share their good practice with every Social Services in England. I’ve used all of their services and they are all excellent. I would
recommend anyone with sensory loss to come to Essex.
Rose
By the end of the show he had made quite few acquaintances who he then met again during the interval. He was not able to see what was going on and like all theatres it was poorly lit. He also needed assistance to get to
the bar and other areas of the theatre safely. But the musical was fantastic, he knew most of the words and sang along quite happily and he clapped his hands in time to the music and to show his appreciation. The theatre was also able to provide descriptive head phones if he wanted. All was
well and good and Mr Blindman was quite happy.
Mr D was really looking forward to seeing the musical, but unfortunately the Theatre did not have a BSL interpreter that night and as the show was
mainly a musical, it was quite difficult to follow the plot. During the interval he was mainly ignored by other theatre goers and asking for a drink at the
bar was quite eventful with lots of pointing and charade play at work. Although he was able to buy a programme he still was not absolutely
certain of the storyline (Mr D’s first language is BSL) but there was lots of visual stuff going on; flashing lights, scenery, the dancing was really good; and he was able to clap his hands in unison when he saw the other theatre-
goers clap. All wasn’t too bad and Mr D enjoyed the visual experience.
After the theatre, they were both invited to a nearby party. Lots of people were there, nice food to eat and the drinks were flowing. The atmosphere
was really good. People were able to see Mr B’s mobility aid and most were quite helpful. He happily chatted away to the other party goers, had a little dance to the many tunes that was being played and made quite a few friends. Mr B told lots of jokes and stories about his guide dog and explained that although life was difficult and he sometimes had to do
things in a different way, he still loved meeting people. He was able to communicate with nearly everyone. The room was quite dark but as long as he was very careful and asked for help when needed, he had a really good time. All was well and good and Mr B was very happy. He enjoyed
the whole evening and had some great memories to take with him.
Mr D was not able to join in as much as he would have liked and at first conversation was attempted via lip reading (pretty much impossible due to party lighting and lots of movement). Communication was also attempted
via some quite extensive arm waving and charade play. Eventually it became quickly apparent to all concerned that communication was not
going to be free flowing and he was to be generally avoided at all cost. Mr D did lots of smiling and nodding, ate some lovely food and went home.
Given the above story. I hope it gives an understanding that Dual Sensory Impairment, Visual Impairment, and Hearing Loss are separate and unique
and must be recognised as such.
Hazel Lacey
20
“Five years ago I had cancer and then a stroke. I lost everything on one side: my sight, the arm went, leg, everything.
For about a year, I don’t think I left here. It’s all one side. So I hear one way and I see one way. With television, I see
half, so it’s sometimes muddling, judging who said what.”
It was at this dark time in her life that ES started receiving support from Herts sensory services and two Sense Communicator Guides, Tina and
Angela, who visit her on different days each week.
“Tina came just after the stroke, about five years ago. She’s been with me all this time. I don’t know what I would have done without her. I don’t
know how other people manage who don’t get help like this.”The return of ES’s confidence took time, but step by step it grew.
“I wasn’t sure about having help from Sense at first. But Tina would come and we’d sit and chat. I got used to her and quite looked forward to her
coming along. She used to say “Well, Ok, maybe you don’t want to go out, but let’s just have a little walk around and go downstairs. Then we went
outside to the car, then we went for a trip. And it grew from there.”
“It’s up to me what I want to do and Angela and Tina help me to do it. We go shopping, go on a trip, have a chat in a café, whatever I fancy really.
I’m also member of a blind club and go to that every Tuesday”
ES has come a long way from when she first started getting support from her Sense Communicator Guides and has been on her first Sense Holiday!
“It’s turned my life around from nothing to doing everything I want to do, I wish there were more ways of getting through to other people that are
deafblind out there, because I think it would make such a difference to their lives as well”
ES – Hertfordshire
21
Rebecca Atkinson is going blind.An experimental therapy could offer her the chance to see again -
but would she take it? (First published in The Guardian)
Earlier this year, doctors at Moorfields Eye Hospital, London, began the world's first gene therapy trials to treat 12 patients who have Leber'scongenital amaurosis, a condition that causes progressive sight loss.
Following successful animal trials (said to have restored the vision of blind dogs so they could navigate a maze without difficulty), it is hoped that the technique, which involves injecting working copies of faulty genes directly into the retina, will prove equally effective when carried out on humans. The results will not be made public for a year but, if the technique works,
scientists hope it could eventually be used to treat a wide range of inherited sight disorders affecting up to 30,000 visually impaired people in the UK
and potentially millions more worldwide.
The first viable treatment for blindness is twinkling on the horizon and as one reader said on a national newspaper message board discussing the trials, "The possibility of being able to give improved sight to people with
visual impairments is a great development for the human race." But what of the people we seek to repair? Those who have been born blind and those, like me, who are losing or have lost their vision. Is this what we have been
waiting for? Is it "a great development for the human race", or a stepforward in the eugenic quest for an uber-race, free of imperfection and rid
of the unease about disability that nestles quietly in society's pocket?For the past 13 years I have been losing my sight, due to a genetic and
incurable condition called retinitis pigmentosa (RP). RP causes thephotoreceptive cells on the retina to die off, causing, in my case, tunnel
vision. I liken it to looking at the world down the middle of two toilet rolls. My central vision remains intact, but where once was peripheral vision now float only my thoughts. In time these loo rolls will shrink to knotholes and
then pinholes and then possibly nothing.
In the early years after my diagnosis, blindness remained a repulsive and terrifying concept. Every year I would visit the doctor and he would say the
same thing - that I must live and plan my life with the certainty thatblindness was inevitable. And so, slowly, that is what I learned to do. But
now the advent of gene therapy has pushed open a chink in the door.Disabled people have long asked themselves the hypothetical "would you be cured if you could?" question. Now, for the first time, there is a chance, albeit very small, that maybe one day I might actually get my sight back.
Hurrah, you cry. I must be thrilled. Actually, I am a bit confused. It is easy to assume that all visually impaired people will be hammering down the
doors should gene therapy prove successful. But to say this is to assume that a blind life is lesser and that all blind people really want to be sighted.
Do I want my sight back?
22
They don't. The first blind man I ever met, who also happened to be my boss at the time, is one of them. I recently asked him if he would have gene
therapy if he could. No, came his reply. Because, he tells me, regaining sight is more than just seeing again.
There are issues of identity and culture at stake too. "As the blind-from-birth son of blind parents, I am, in part of my soul, defined by my blindness," he explains. "It directly equates to ethnic or racial origin. If you give a black person the choice to be white there may well be significant advantages in
such a deal: more access to better jobs; freedom from the shackles ofignorant prejudice; in short, a step closer to equality. But I'd bet most would
turn the offer down flat."But what if, unlike my old boss, you haven't always been blind? What if, like me, you grew up with full vision and have seen all the cliche-ridden things that those born totally blind are pitied for never having seen - the
sunset, your own reflection, the look in your lover's eyes. What if your soul is sighted, and then you go blind?
You will cry and wonder why. You will hope and pray. You will wish it would all go away. But the longer your sight has been on the slide, the more it seeps into every crack of your psyche - until one day you are no
longer the "sighted person" who can't see any more. Somehow, strangely, in the dead of night, your identity has rolled over in bed and you wake up and get out the other side a "visually impaired person" - and it feels like
part of you.
It doesn't happen overnight, and perhaps it doesn't happen to all who sail the strange seas of sight loss with me. But for me there came a point when impending blindness was no longer my alien but my friend. I had had my time as a sighted person. I had seen the world through my eyes. Now it
was time to touch it and smell it and hear it.When you lose your vision you have to re-learn the sorts of things that will allow you to survive on the planet, such as crossing the road without being flattened. Next you must tackle the real problem and learn to deal with the attitudes of others as they morph around you. Misconceptions start to spout
from even your oldest friends' mouths because negative attitudes about blindness permeate us all.
You are about to cross over into the dark side and see what wriggles and writhes on the underbelly of society. Folk will see you as the sufferer, the pitiful, the afflicted, the subhuman - that's you, yes, you. If you use a cane
or a dog, people will stare as you walk down the street. People will assume you are more lacking in intelligence than your sighted counterpart. People you have never met before will ask if you want children, and if you do, they will ask if the kids will have the same condition that you have, and whether that is right or wrong. Welcome. Your reproductive autonomy is in
the docks of the moral courts of the nation's minds.So if this underbelly is so wretched, surely if the time comes when the
doctors are looming forth with a needle containing the working version of my faulty gene and heralding the promise of a new day, one with a bright
sunset and me at the wheel of a fast car, I'll take it, right? Anything to
23
escape? No. Saying yes to seeing again, even for someone who wasn't born blind, isn't easy. The repercussions would ripple beyond my eyes into
my friendships, my work, my relationship. Would I retain the unity I have with my disabled brethren if I could see? Or
would I have different friends, the type who fall by the wayside nowbecause they are not aware or empathetic, or are too aesthetically
obsessed? Would I lose the friends with whom I have nothing in common but who remain in my phone book because they get the blindness thing? And would it be right to dump them just because I can see and don't need
their empathy any more? If I stepped into the pool of "normal people" again, where would my identity go?
The kernel of who I am has been sucked into a new body; now it would have to be sucked back into the old one. And what of my relationship?
Would we stay together or would I run off to do all the things I never got to do before? There is a high rate of separation among couples where one
person gets a guide dog for the first time. Why? Because suddenly they can do things on their own again. This new-found independence shifts the
balance and cracks appear. If this can happen with a dog, think what could happen with a pair of fully working eyes and a car.
Going blind isn't a smooth ride, though. It comes down and squishes you under an insurmountable weight of grief and disbelief. It is limiting,
frustrating and changes the way you do many of the things you used to enjoy - now you must dance with the light on and drive from the back seat.
But like the affirmation of near death, it affects more than just yourphysicality. It gives you a unique perspective. It is a grand experiment that most don't get to try; to observe as your brain rewires and watch as the
human body adapts in infinite ways. When my vision began to get worse, I bumped into everything in my path because I was still careering down the pavement at the speed of someone who could see. As my mind caught up with my eyes, I changed the way I walked - with more caution and less
speed - and the perpetual bumping and tripping stopped.
Losing your sight is not like just shutting your eyes. The loss is so gradual that as one sense dies others grow. Suddenly you can smell the world and
sense when someone is standing out of your line of vision. Your brain grows on the inside and things on the outside start to matter less. I get to live my life twice over in two different bodies (the sighted one I used to
have and the partially sighted one I now have), and with that comes the privilege of spying on the world and its intricacies from
multiple vantage points.It's a cliche to say that disabled people are nicer. It is incorrect, in fact. But
for me, vision loss has made me more empathetic and more open- minded. I have to take so often that I give more freely. When you rely on friends to
take you down Oxford Street or a stranger to get you across the road, you think more consciously about what you give back and battle with the
feeling that you need them more than they need you. But, strangely, I am happier like this than if I had carried on down the middle lane to mediocre city never having seen or felt real loss and known how to appreciate the
good things around me.
24
I have met people I would never have met had I been sighted, and we have been joined together by the common bond of disability (and there is no
glue that sets as hard as that squeezed from the pores of a minority). When part of your body starts to die you feel what it is to be human. You wake up from the slumber of being just another idiot with an iPod because you
are forced to work out the bigger questions. Or at least ask them. Why am I here? Why is this happening? You are alert to the immediacy and fragility of your life. You know that the choices of the modern age do not and can not extend into every realm of your life. You can't choose to see (at least not yet). This is it. The upshot? You live in the moment. You settle for your
lot and love it.
The concept of sight loss as a positive thing is an elusive one. It is hard to grasp when you have experienced it; and even harder to grasp when you haven't. It is not something I would have chosen, but it is not something I wish hadn't happened. Would I like to stop it getting worse? Yes, because
I'm only human and sometimes I lie awake worrying how I'll cope when it's all gone. But would I like to have gene therapy and see perfectly again?
Five years ago I'd have said yes. Now I'm not sure, because if thisexperiment of going blind has taught me anything, it is that what you lose
in one place you gain elsewhere, and while a blind life is different to a sighted life, it is not lesser. And ultimately it is better than having no life at
all.
Rebecca Atkinson – Toylikeme.org
I am not sure if people truly understand what hearing impairment is and what it means for that person.
I was once told the following story:Mr Blindman and Mr Deafman went out socialising one evening. Mr B left
his Guide dog at home and took his mobility cane with him. They both went off together to enjoy an evening of fun and were excited with the prospect of meeting new people. All was well and good and both were very happy.
Off they went by train. Mr D was able to read the timetables and Mr B was able to hear the loud speakers giving out up to date information. All was
well and good and both were very happy.
The platform was quite busy but Mr B was given a little bit more space. He was able to chat to other travellers and was also sometimes treated quite
differently as people recognised the white mobility aid. As they were together, fellow travellers tried to involve Mr D, but soon
gave up as it wasn’t easy to chat with him and keep a conversationflowing. Anyway Mr D had other things on his mind; he was not able to
hear the travel announcements, needed to use high levels of concentration, be aware of everything around him, keep his eye on the ever changing time table, have telepathic powers and pre-empt what other passengers were doing, did not hear the words “excuse me” and would often get
pushed out of the way by an impatient fellow traveller. But all was fairly ok and Mr D was still fairly happy.
The travel announcement told passengers that the now due train was going to arrive on a different platform. Mr B heard this, asked for help and some
very kind members of the public assisted him to the correct platform. All was well and good and Mr B was quite happy.
Mr D did not realise what was happening until he noticed a massevacuation of the platform. Not sure if he was now in an emergency
situation, he followed the crowd with his fingers crossed. Finally the Travel announcement board caught up with the Speaking travel
announcement and he realised it was just a platform change. Although now a bit unsettled Mr D was still looking forward to the evening.
They began the evening by seeing a Musical show at well-known theatre. Mr B loved it. He was ushered to his seat by a very kind usherette who
made sure he was comfortable and did not need anything. Whilst waiting for the show to start, Mr B was not able to read the programme but instead
chatted to other theatre goers, i.e asked about the show, how manyintervals were there, where the bar was.
25
When I’m in the house, in my environment it’s not too bad in the sense that I know where everything is, but when you have TV and radio on
and people talking I miss out on a lot of the conversation simplybecause I can’t hear properly.
As far as washing clothes and dressing, I have to ask my wife to match the clothes. Once I went out dressed like a technicolour dream coat!
I just don’t sit there and let my wife do laundry, but sometimes ask my wife what colours I’m putting in the washing machine. Jeans are not too
bad because I can tell by the material but a lot of the clothes feel the same and it is down to visual, so l have to ask what the colours are.
Trevor Ewen – Newham
People must not have low expectations of deaf blind people.
I am deaf blind myself with Usher sydrome. I founded and run my own not-for-profit organisation called ToyLikeMe.org. I am also writing and creating a children's TV animation series which is in development with Cbeebies. I have a lovely husband and two children. I know of deaf blind psychologists, TV execs, charity workers, artists and more. It is possible to live a full and happy life as a deaf blind person; the main issues are the way society treats you, not the actual phsyical state of
hearing and sight impairment. The key thing is to embrace who you are, never be ashamed or hide from the world. Take all the tools available, guide dogs, white canes, hearing aids, cochlear implants etc and run
with them. Live for today and focus on the things you can do, and not what you can't.
I am not saying everyone can achieve all this, we all have different skills and chances, but all deaf blind people have potential to be and do
wonderful things.
Rebecca Atkinson
By the end of the show he had made quite few acquaintances who he then met again during the interval. He was not able to see what was going on and like all theatres it was poorly lit. He also needed assistance to get to
the bar and other areas of the theatre safely. But the musical was fantastic, he knew most of the words and sang along quite happily and he clapped his hands in time to the music and to show his appreciation. The theatre was also able to provide descriptive head phones if he wanted. All was
well and good and Mr Blindman was quite happy.
Mr D was really looking forward to seeing the musical, but unfortunately the Theatre did not have a BSL interpreter that night and as the show was
mainly a musical, it was quite difficult to follow the plot. During the interval he was mainly ignored by other theatre goers and asking for a drink at the
bar was quite eventful with lots of pointing and charade play at work. Although he was able to buy a programme he still was not absolutely
certain of the storyline (Mr D’s first language is BSL) but there was lots of visual stuff going on; flashing lights, scenery, the dancing was really good; and he was able to clap his hands in unison when he saw the other theatre-
goers clap. All wasn’t too bad and Mr D enjoyed the visual experience.
After the theatre, they were both invited to a nearby party. Lots of people were there, nice food to eat and the drinks were flowing. The atmosphere
was really good. People were able to see Mr B’s mobility aid and most were quite helpful. He happily chatted away to the other party goers, had a little dance to the many tunes that was being played and made quite a few friends. Mr B told lots of jokes and stories about his guide dog and explained that although life was difficult and he sometimes had to do
things in a different way, he still loved meeting people. He was able to communicate with nearly everyone. The room was quite dark but as long as he was very careful and asked for help when needed, he had a really good time. All was well and good and Mr B was very happy. He enjoyed
the whole evening and had some great memories to take with him.
Mr D was not able to join in as much as he would have liked and at first conversation was attempted via lip reading (pretty much impossible due to party lighting and lots of movement). Communication was also attempted
via some quite extensive arm waving and charade play. Eventually it became quickly apparent to all concerned that communication was not
going to be free flowing and he was to be generally avoided at all cost. Mr D did lots of smiling and nodding, ate some lovely food and went home.
Given the above story. I hope it gives an understanding that Dual Sensory Impairment, Visual Impairment, and Hearing Loss are separate and unique
and must be recognised as such.
Hazel Lacey
26
The Flamingo Sombrero Hat‘She’ll be blind by the time she’s thirty’, was what they said
To my mother when I was but sweet sixteen.The news at the hospital did fill her heart with dread -
For my future very bleak did it seem.
And as we came out in the grounds of Westgate,I lodged in my young sub-conscious mind
The turmoil in her state -For she never told me the news, awful in kind.
But straight to Slough shopping did we in fact,And there in BHS for me she did buy
A lovely bright flamingo sombrero hat -For my travels to Alsace, by the by.
Where I was to stay with a French family,By way of going on a school exchange.The purpose my O levels to help study -
Which my parents and teacher had arranged
Not long after, I found myself travellingTo Lourdes on a National Pilgrimage.
What an experience to be singing and praisingIn that hallowed place of prayer and homage.
I did well with my exams and proceeded to Sixth FormWhere I studied for A levels in French and Literature.But in that time I struggled and could not perform -
Both mentally and physically, for sure
My mind was trying to come to termsWith the special treatment I’d been receiving
From all my relatives and friends -I just couldn’t cope with the kindness and giving.
27
Rebecca Atkinson is going blind.An experimental therapy could offer her the chance to see again -
but would she take it? (First published in The Guardian)
Earlier this year, doctors at Moorfields Eye Hospital, London, began the world's first gene therapy trials to treat 12 patients who have Leber'scongenital amaurosis, a condition that causes progressive sight loss.
Following successful animal trials (said to have restored the vision of blind dogs so they could navigate a maze without difficulty), it is hoped that the technique, which involves injecting working copies of faulty genes directly into the retina, will prove equally effective when carried out on humans. The results will not be made public for a year but, if the technique works,
scientists hope it could eventually be used to treat a wide range of inherited sight disorders affecting up to 30,000 visually impaired people in the UK
and potentially millions more worldwide.
The first viable treatment for blindness is twinkling on the horizon and as one reader said on a national newspaper message board discussing the trials, "The possibility of being able to give improved sight to people with
visual impairments is a great development for the human race." But what of the people we seek to repair? Those who have been born blind and those, like me, who are losing or have lost their vision. Is this what we have been
waiting for? Is it "a great development for the human race", or a stepforward in the eugenic quest for an uber-race, free of imperfection and rid
of the unease about disability that nestles quietly in society's pocket?For the past 13 years I have been losing my sight, due to a genetic and
incurable condition called retinitis pigmentosa (RP). RP causes thephotoreceptive cells on the retina to die off, causing, in my case, tunnel
vision. I liken it to looking at the world down the middle of two toilet rolls. My central vision remains intact, but where once was peripheral vision now float only my thoughts. In time these loo rolls will shrink to knotholes and
then pinholes and then possibly nothing.
In the early years after my diagnosis, blindness remained a repulsive and terrifying concept. Every year I would visit the doctor and he would say the
same thing - that I must live and plan my life with the certainty thatblindness was inevitable. And so, slowly, that is what I learned to do. But
now the advent of gene therapy has pushed open a chink in the door.Disabled people have long asked themselves the hypothetical "would you be cured if you could?" question. Now, for the first time, there is a chance, albeit very small, that maybe one day I might actually get my sight back.
Hurrah, you cry. I must be thrilled. Actually, I am a bit confused. It is easy to assume that all visually impaired people will be hammering down the
doors should gene therapy prove successful. But to say this is to assume that a blind life is lesser and that all blind people really want to be sighted.
28
Secretly with dread I thought ‘Am I going to die perchance?’Too afraid to upset my loving parents.
And then, one night it happened by chance -Whilst doing homework the truth became patent.
I’d asked my youngest sister to fetch meSome file papers from the bureau of my dear father.
And there amidst the pile, this letter I did see -A reply to one that had been sent – rather.
The words, the reassuring words, were all that I just saw.They sprang out, declaring, ‘Slowly but surely going blind.’
Such relief! For now I was no longer at death’s door -The fear, the anxiety and the unknown I could leave behind.
I waited until all my sisters had gone to bedAnd approached both my parents about my discovery.
So upset were they to learn of my experiencing real dread -That in future everything would be divulged - they promised me.
Though my exam results finally weren’t all that great,Somehow I managed to be accepted for teacher training.
I did well, and once qualified found my fate -In lovely Marlow, in a primary school doing some teaching.
For eight years I was thus employed in this situation.By then, through my mother’s doctor, it was established
That my older sister and I both had a condition -Called ‘Usher’s Syndrome’, which both sight and hearing affected.
Upon the suggestion of a Special Needs Advisor,A year at Edgbaston University was spentWhere I undertook a specialist course forTeaching children with visual impairment.
After a year working in High WycombeWith children with multiple disability,
Upon the persuasion of a friend did I succumbAnd applied for a job in Cambridge Authority.
They don't. The first blind man I ever met, who also happened to be my boss at the time, is one of them. I recently asked him if he would have gene
therapy if he could. No, came his reply. Because, he tells me, regaining sight is more than just seeing again.
There are issues of identity and culture at stake too. "As the blind-from-birth son of blind parents, I am, in part of my soul, defined by my blindness," he explains. "It directly equates to ethnic or racial origin. If you give a black person the choice to be white there may well be significant advantages in
such a deal: more access to better jobs; freedom from the shackles ofignorant prejudice; in short, a step closer to equality. But I'd bet most would
turn the offer down flat."But what if, unlike my old boss, you haven't always been blind? What if, like me, you grew up with full vision and have seen all the cliche-ridden things that those born totally blind are pitied for never having seen - the
sunset, your own reflection, the look in your lover's eyes. What if your soul is sighted, and then you go blind?
You will cry and wonder why. You will hope and pray. You will wish it would all go away. But the longer your sight has been on the slide, the more it seeps into every crack of your psyche - until one day you are no
longer the "sighted person" who can't see any more. Somehow, strangely, in the dead of night, your identity has rolled over in bed and you wake up and get out the other side a "visually impaired person" - and it feels like
part of you.
It doesn't happen overnight, and perhaps it doesn't happen to all who sail the strange seas of sight loss with me. But for me there came a point when impending blindness was no longer my alien but my friend. I had had my time as a sighted person. I had seen the world through my eyes. Now it
was time to touch it and smell it and hear it.When you lose your vision you have to re-learn the sorts of things that will allow you to survive on the planet, such as crossing the road without being flattened. Next you must tackle the real problem and learn to deal with the attitudes of others as they morph around you. Misconceptions start to spout
from even your oldest friends' mouths because negative attitudes about blindness permeate us all.
You are about to cross over into the dark side and see what wriggles and writhes on the underbelly of society. Folk will see you as the sufferer, the pitiful, the afflicted, the subhuman - that's you, yes, you. If you use a cane
or a dog, people will stare as you walk down the street. People will assume you are more lacking in intelligence than your sighted counterpart. People you have never met before will ask if you want children, and if you do, they will ask if the kids will have the same condition that you have, and whether that is right or wrong. Welcome. Your reproductive autonomy is in
the docks of the moral courts of the nation's minds.So if this underbelly is so wretched, surely if the time comes when the
doctors are looming forth with a needle containing the working version of my faulty gene and heralding the promise of a new day, one with a bright
sunset and me at the wheel of a fast car, I'll take it, right? Anything to
For seventeen challenging years did I striveIn mainstream schools to establish integrated provision.
And my effort and achievements I looked upon with pride -Though, alas, eventually I soon became disillusioned.
In the end they did not treat me well.After the deceit, and the hurtful ostracising,
I decided that it was time to bid farewellTo all that I’d devoted with love and sacrificing.
With determination and persistence I diligentlyContinued as a volunteer consultant for the NHS
And the City Council regarding issues of disability -And pursuing further training in counselling nonetheless.
Then my eyes really worsened to the stageI could no longer read without assistance.
My secondary cataracts did rapidly engage -And so my consultant accorded me guidance.
Two operations I had within the last yearWhich thankfully were both successful.
And now I can look forward with some cheerTo more tasks and studies less stressful.
Now I am but two and fifty -At a time of life where I am making the most of it.
Travelling the world with the help of WFT -Climbing mountains, yacht sailing, snorkelling and the rest of it.
I look back to that time of diagnosis,And remember the bright flamingo sombrero hat -
The despair, the anxiety and the prognosis –My life has been fulfilling and interesting, despite all that.
Pauline Brown
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Mostly I use accessibility features built in to IOS devices, iPhone and iPad:Zoom; Text to speech; Speech to text; Magnifier; LED flash alerts; Large text.
When my phone rings it vibrates and flashes an LED light, and vibrates my watch/iPhone.
My aids are paired with my iPad, iPhone and Macbook. The apps I use are from Resound, smart app & tinnitus relief app. I have just downloaded the
Bioaid app; I have been looking for an app that works with my AirPods so I am going to give that a go.
The other devices that are paired to my iPhone/IPad, and watch are:-Nest (smoke alarm and carbon monoxide detector)
-Canary (security camera. Can alert me to movement in my front room)-Smart Life with WiFi socket controller (controls my lights & other devices
around the house from my watch, iPhone or iPad)-IVMS-4500 (attached to my outdoor CCTV cameras which alerts me if
movement is detected)
I have also installed Amazon Echo Dot/Alexa devices that also control my lights by me saying something like “living room light on”. These devices are great- you can ask them what’s going on in the news, the weather forecast,
train times or read me a story and much more.
I currently don't have anything to detect if someone is at the door but I am looking at 2 options: RING door bell or NetzHome with a vibration sensor.I haven't decided which yet, but my wife is getting fed up with telling me
someone is at the door when I don't have my aids in!
We have given Mum (also deafblind) a panic button (Wi-Fi) which uses NetzHome app. If triggered it sends an alarm to the mobiles of the whole
family. We do have a movement sensor in mum’s front room but that hasn't been very reliable.
The Resound multi mic you kindly supplied is working well at home & work. I use it to stream Phone calls & sound from my PC at work & TV & Macbook
at home.
I have recently written to Apple. As you know I have become to rely on my iPhone & IPad. My concern is that I won't be able to afford Apple products
at the current prices. I am hoping they have, or could set up, a supportprogram in place to help people like me who rely on using their devices to
go about their daily lives. Without them my world would become a lot smaller. To me that's scary.
Malcolm G – Medway
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I am a DeafBlind adult with Type 2 Ushers Syndrome-, which means I have moderate hearing loss and narrow tunnel vision due to RP.
There seems to be relatively little awareness of DeafBlindness as a separate disability - It is only recently that I was aware of it myself!Most of the time my deafness and blindness are treated separately;
different hospital departments, different local charities; and the impact of each on the other not fully taken into account. There are
exceptions. My local Sight charity is very good, and the SocialServices DeafBlind team are excellent.
What really helps me is technology. My computer with assistivesoftware, loud, easy to use phones, and hearing aids that transform
what I can hear.
Steve – Kent
I started losing my sight when I moved into the care home. I can see the outline of people but not the finer details. I have needed hearing
aids for years, I find they help dramatically.
Age does everything to you gradually. You have to adjust, you can’t play goal or centre forward anymore (I am a football lover).
As time goes by dual sensory loss gets worse and this makes things become dull.
My comm guide talks to me and makes me feel better. Having some-one to listen helps. Audiology are also helpful, and my carers are
fantastic.
Edward Setterfield - Wiltshire
31
Pitter Patter Pitter PatterMakes the sound of the rain drop
Please keep falling and do not stopI like it when it rains everydayEspecially in the month of May
Look out how the raindrops fallsIt falls on each one and all
It falls on me and it falls on you.It falls and wet my new red shoes.
In my world
In my world, I like all the bad weatherIf its snowy or if its rainy,
But I do not have to botherAnd I would say
“thank you God and Lord for sending memy favourite weather”
In my worldI like all the hot, hot weather
in Pakistan.But I do not have to bother
And I would say“thank you God and Lord for sending me
my favourite weatherin Pakistan”
Sarah Ahmed – NewhamI am 27 years, deafblind, love braille and flower arranging.
Pitter Patter Pitter PatterMakes the sound of the rain drop
Please keep falling and do not stopI like it when it rains everydayEspecially in the month of May
Look out how the raindrops fallsIt falls on each one and all
It falls on me and it falls on you.It falls and wet my new red shoes.
In my world
In my world, I like all the bad weatherIf its snowy or if its rainy,
But I do not have to botherAnd I would say
“thank you God and Lord for sending memy favourite weather”
In my worldI like all the hot, hot weather
in Pakistan.But I do not have to bother
And I would say“thank you God and Lord for sending me
my favourite weatherin Pakistan”
Sarah Ahmed – NewhamI am 27 years, deafblind, love braille and flower arranging.
Rain Drops
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Sight loss has always featured in my life, but the impact of hearing loss is more recent. With a recent diagnosis of CAPD, I’ve come to understand why
it has always been difficult to process auditory information and interact.
I find it increasingly difficult to cope in noisy places, such as in crowds, around background music or in traffic. Everything becomes a cacophony of sound and it gets stressful. It isn’t possible to use visual cues so you stand
aside lonely amongst all those people socialising or bustling around.
I attend many meetings, but miss more and more because few places have hearing loops. Getting Braille information has always been a battle, but now capturing information by auditory means is getting tough too. I feel
independence fought for over the years is now slipping. The net of isolation is taking hold as the power of interaction and information drifts away.
Emily Brothers – Sutton
I miss driving and shopping. Shopping is the hardest thing to do as I can’t see what’s on the shelf. People in the shops ignore me; they aren’t helpful.
My daughter helps me do the shopping. Chip and PIN is difficult.Crossing the road is dangerous as I struggle to hear and see cars coming. Making tea or coffee has become risky but I have a liquid level indicator
that helps.
I was disappointed to hand in my drivers license but I knew I was a risk when I almost hit a man on a push bike! The day I gave in my license was
the day I lost my eyes. It was a huge loss of independence, I grieved.
RNIB and Hearing and Vision Team have been so helpful.I struggle with inconsiderate people when shopping. When struggling to
see items on the shelf, one member of the public said ‘get out of the f***ing way’. Someone also said, ‘he’s as blind as a bat and as deaf as a
post’.
Mr Derek Whale - Wiltshire
33
SoHo and sandwiches:My adventures with communicator guides
34
Over the years I have worked my way through at least 14 GuideCommunicators. Some have left through retirement, or moved on to another
job, most were excellent but 4 or 5 were totally unsuitable. One hadaspirations of grander things and took it upon himself to address my dress
sense; he didn’t appreciate my eclectic style of dress.
In all the years I have been supported by a Guide Communicator, only one was familiar with London. I am perplexed that many Londoners do not
know London.
I have passed though many streets of London and on this occasion, we had a great time walking to Coram Fields, leading to Conduit street one of my favourite streets of London, taking us to the Foundling hospital museum,
passing historic pubs on the way.
I love that part of London, Bloomsbury. When I first came to London I got a job there at the Bloomsbury hotel , I used to love knocking on the door, and cheerfully calling out “Housemaid!” and the door would open for them to
see a burly nearly 6ft man.
I did Sir George Solti’s room once. He gave me a much appreciated tip.
Being Deaf and calling out “House maid”, could have led to manyinteresting predicaments. It was always safer to wait for the door to be
opened to me, being deaf and not hearing the reply; who knew what I may walk into?
I arrived from North Yorkshire, Gatehelmsley, to Bermondsey, London in September 1986.
I was born mono aural, no hearing in my left ear and because of my health conditions hearing in my other ear deteriorated. I have sensory neural loss. I
then lost my sight in my left eye due to oxygen starvation and diabeticretinopathy. Not helped by a miss- spent youth!
35
I was excited to come down South and to start a new adventure but I always intended on returning to North Yorkshire. I came to London to go to Goldsmiths college where I did a post graduate course in Education. After I
finished my studies, I returned to Yorkshire to Holm-on-Spalding-Moor where I worked on a farm.
I have never let my dual sensory loss limit my life experiences. It has led to many disasters but also lots of adventures. I play life safe, but my motto
is, If I avoid things I’m not living. Due to being type 1 diabetic from childhood and having other health conditions, I was always told that I
wasn’t expected to live very long, but I am still here. I have defied and baffled the medics!
I have always managed to work and have held a variety of jobs. I have been a Butcher’s apprentice, warehouse man, worked in an abattoir, rat
man, worked in an animal house- looking after animals, researchtechnician, bar man, kiss-a-gram, housemaid, university lecturer, secondary
school teacher, Deafblind Awareness Trainer, medical researcher – Ispecialised in exploring diabetes and pregnancy - extracting beta Cells.
My most enjoyable job was as the Friday night cabaret artist, in the confer-ence hall in York.
All jobs you do, are like all the places you visit: a variety. And if you look around you and get to know and experience the places, you can find
pleasure in most things.
I have led a life like anyone else. I have tried to have a go at most things. Some will be failures and some will be great successes but all in all you
learn something along the way.
An example was when I took up Mountaineering, which was the most stupid thing I have ever done because I’m afraid of heights. Because I
couldn’t see most things, I would take, what others called, risks. And would turn the mountaineer guides absolutely frantic!
I recall, after a one walk, eating my sandwiches sitting on a ledge looking out over the vista up Great End, the mountain in Cumbria. I could feel the
wind, trying to blow me off the ledge! It was exhilarating.
The dangers were, that because of my Deafness that I was not aware of people giving, actually shouting advice to me...or just shouting! I couldn’t
hear their warning calls. When I was climbing, It was absolutely terrifying. But when you get to the top, it’s the most wonderful feeling. For all the
pain and fear it is so worth doing.
I love transport and buses and I love the feeling of movement and the bus turning round corners. For me it is an exhilarating experience.
The biggest challenge I face now is communicating with others and finding help when I need it. Trying to fill in government forms and such.
You feel like society doesn’t want you. I could previously contact thesensory team by fax but now, it really is a big problem. There is no
sensory team, and there are no dedicated Fax machines anywhere any more. Who do I go to who could help? I had a great relationship with my
local sensory team, I knew them and they all knew me.
Not being able to get into contact with council people, it can really get you down, and the majority of the time I prefer to be independent. But it is
increasingly difficult and a lot of people just don’t understand.
I was introduced to the online world, however now my computer is broken and I cannot afford to replace it.
My independence is everything, getting out into the community. Due to my neuropathy and other things, my mobility is a problem. I cannot go out by
myself any more.
Once, I took my London born guide communicator to SoHo. Because they didn’t know where it was and they didn’t know the history of the place. I
loved the freedom of going out with a guide and telling them all about where we were going. I have never found it difficult talking with people, I
just rabbit on, whether I can fully understand them or not and themunderstand me.
My mantra is, You don’t stop, if you have a mind that never gives in and does not stop, don’t allow yourself to be brought down. It is easy to get
depressed and feel low. There will always be things that bring you down. But, to find a way to mentally get up and move on is key to me. You use whatever you have got to spot the little things in life and to enjoy them,
however you can.
David Perrin
36
Mostly I use accessibility features built in to IOS devices, iPhone and iPad:Zoom; Text to speech; Speech to text; Magnifier; LED flash alerts; Large text.
When my phone rings it vibrates and flashes an LED light, and vibrates my watch/iPhone.
My aids are paired with my iPad, iPhone and Macbook. The apps I use are from Resound, smart app & tinnitus relief app. I have just downloaded the
Bioaid app; I have been looking for an app that works with my AirPods so I am going to give that a go.
The other devices that are paired to my iPhone/IPad, and watch are:-Nest (smoke alarm and carbon monoxide detector)
-Canary (security camera. Can alert me to movement in my front room)-Smart Life with WiFi socket controller (controls my lights & other devices
around the house from my watch, iPhone or iPad)-IVMS-4500 (attached to my outdoor CCTV cameras which alerts me if
movement is detected)
I have also installed Amazon Echo Dot/Alexa devices that also control my lights by me saying something like “living room light on”. These devices are great- you can ask them what’s going on in the news, the weather forecast,
train times or read me a story and much more.
I currently don't have anything to detect if someone is at the door but I am looking at 2 options: RING door bell or NetzHome with a vibration sensor.I haven't decided which yet, but my wife is getting fed up with telling me
someone is at the door when I don't have my aids in!
We have given Mum (also deafblind) a panic button (Wi-Fi) which uses NetzHome app. If triggered it sends an alarm to the mobiles of the whole
family. We do have a movement sensor in mum’s front room but that hasn't been very reliable.
The Resound multi mic you kindly supplied is working well at home & work. I use it to stream Phone calls & sound from my PC at work & TV & Macbook
at home.
I have recently written to Apple. As you know I have become to rely on my iPhone & IPad. My concern is that I won't be able to afford Apple products
at the current prices. I am hoping they have, or could set up, a supportprogram in place to help people like me who rely on using their devices to
go about their daily lives. Without them my world would become a lot smaller. To me that's scary.
Malcolm G – Medway
Most people have heard of Helen Keller, but did you know some of her achievements were:The first deaf-blind person to earn a Bachelor of Arts degree.
A member of the Socialist Party of America and the Industrial Workers of the WorldA campaigner for women's suffrage, labor rights, socialism, antimilitarism, and other similar causes.
A world-famous speaker and author, well-traveled and outspoken in her convictions An advocate for people with disabilities, and numerous other causes.
The Deaf community was widely impacted by her. She traveled to twenty-five different countries giving motivational speeches about Deaf people's conditions.
She was a suffragette, pacifist, radical socialist, and birth control supporter. Not bad going for any young woman back in those days, let alone a person who was deafblind!
“Never bend your head. Hold it high. Look the world straight in the eye”
37
Celebrities with sensory loss
Haben Girma went to Harvard Law School where she became the firstdeafblind person to graduate with a law degree. She also has a Bachelor of Arts degree in Sociology/Anthropology from Lewis & Clark College. She has practiced as an attorney at Disability Rights Advocates up until April 2016 and
is recognised around the world for the work sheʼs doing on advocating for disability rights, reasonable accommodation, and the need for accessible technology. Her list of accolades is ever-growing. Most notably, she was
selected as the White House Champion of Change.
Laura Dewey Lynn Bridgman was left deafblind at the age of two after suffering a bout of scarlet fever. She was educated at the Perkins Institution for the Blind,
where she learned to read and communicate using Braille and the manual alphabet. She gained celebrity status when Charles Dickens met her during his
1842 American tour and wrote about her accomplishments in his American Notes. . She is recognised as being the first deaf-blind child in the US to have
obtained a formal education, inspiring many other families, including Kate Keller, Helen Kellerʼs mother.
Academy Award winner Halle Berry is hard-of-hearing, having lost 80% of her hearing in her right ear. She is also an advocate for ending violence against women and an advocate for individuals with disabilities. Today, not only is Halle an immensely successful actress and mother but she also is extremely open about her life with diabetes as well as the incidents that caused her to
lose most of her hearing.
Real name William Adams, Will. I. Am is an American rapper, songwriter, TV star, actor, DJ, record producer and philanthropist. He developed tinnitus in the early years of his life due to exposure to prolonged loud music. Tinnitus gener-ates a constant ringing in the ear; once the nerves in the ear are damaged it is
incurable. Having this condition can produce serious pain and people who suffer from this condition tend to surround themselves with noise all the time to
make the ringing easier to ignore.
Thomas Edison had hearing problems from childhood and was thought to be completely deaf by his early teenage years. The cause of his deafness is
unknown, although it did run in Edisonʼs family. One of Edisonʼs most remarka-ble achievements is the invention of the lightbulb. He also designed and devel-oped the system of electric power to generate electricity to homes, businesses and factories – a crucial advancement in the Modern Industrialised World.
Edison also produced the phonograph, which was used to create motion pictures
Ludwig Van Beethoven started to lose his hearing at the age of 26, with a suspected disease called typhus. By the age of 52 he was presumed to be
completely deaf. However this is when he produced some of his most impor-tant works. As his hearing got worse Beethoven struggled to communicate
with people. The biggest challenge for him was conducting and performing in concerts as he couldnʼt hear when the music stopped and the audience applauded. Beethovenʼs Ninth Symphony, composed after heʼd lost his hearing, is considered one of the greatest classical pieces of all time.
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