Breaking Barriers ACTION - information, campaigns, ClearMask
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
Company president Allysa Dittmar
Breaking
Barriers
ACTION PEOPLE EXPERTS
information, campaigns, interview, opinion, diary, biomedical, information,
services experience technology
CONTENTS
On their last day at
Blanche Nevile secondary
school, deaf students
Kimberly (left) and
Roumy, friends since they
were eight, look forward
Action People
to going to college.
They were photographed 04 FIVE FACTS 14 FORGING A PATH
by Stephen Iliffe as part Spotlight on our Information Farrier Mark Rudge on why
of his portrait series at Line manager, Rachel Cox horse power is the driving
www.deaf-mosaic.com force in his life
06 CAMPAIGNS
A new, potentially life-saving 17 OPINION
999 video relay service for Our regular columnist Jean Experts
sign language users and BSL Straus on summer travels
legislation Bill breakthrough
18 A PARENT’S DIARY 30 WHAT’S IN THE
08 GIFT OF A LIFETIME Tried and tested tips on how PIPELINE
Why gifts in Wills are so to enjoy a stress-free day out We’re funding research that
important to RNID – and as a deaf parent could lead to exciting new
how it’s a gift that keeps on treatments for hearing loss
giving 20 COVER INTERVIEW and tinnitus within 10 years
Allysa Dittmar turned one of
10 AHEAD OF THE CURVE the worst days of her life into 32 ASK THE INFO LINE
How our new quick and easy a mission to help others A new feature in which our
online check to detect expert Information Line
hearing loss can help those 24 MAKING A CHOICE team provide practical and
affected get support sooner Vera Brearey explains her emotional support
decision not to pursue sign
language training 34 TECH TIME TRAVEL
To celebrate 110 years of
26 TINNITUS AND ME RNID history, Kevin Taylor
In a new feature on people’s looks back at more than 30
experiences of tinnitus, Hilde years of assistive technology
tells us what gets her through
38 IT STEMS FROM HERE
28 READ MY LIPS Dr Faizah Mushtaq, one of
Lipreading classses are our former PhD students, on
underway for a new term her career in hearing research
As the days get shorter and the nights draw in, we are all likely to
find ourselves stuck inside more as summer fades. So I’m delighted
to bring you your latest magazine issue full of insight, interest and,
we hope, inspiration for the months ahead. Dawn Dimond, Editor
3
Information
5 facts about CAMPAIGNS I INFORMATION I SERVICES
RACHEL COX
3
1
2
I have worked for We’re a small team Recently, the top enquiries have been
RNID for nearly 15 of only five and, on around equipment, audiology provision,
years, mostly for the average, the tubing and batteries, equal access to
Information Line. I can Information Line information, benefits and masks/face
honestly say I love my deals with around 25,000 coverings. We also support people who are
job. We are often the enquiries each year! experiencing feelings of loneliness and
During the pandemic we depression via our Tinnitus Helpline.
first place someone
will go to share their had extra support from five
concerns, worries and Regional Information
4
fears about hearing Managers, which was I live in Peterborough with
loss. Information can vital in helping us expand my husband and two young
be life-changing and I our reach to those children. In 2017, we bought
genuinely get great who needed it. a new house and started a
satisfaction from massive renovation project
helping others. – we’re well on the way to
having our dream family
5
home.
I used to be a See our new Information
competitive
Line Q&A feature on p32
swimmer in my
teens – swimming for the
County, Midlands and at
National level. This taught
me many life skills like the
value of hard work, high
levels of commitment and
dedication to my training of
2-3 hours before and after
school, 6 days a week, from
a very young age.
4 RNID I AUTUMN 2021
2021 21
Campaigns
LIFE-SAVING SUCCESS FIRST STEP IN BSL BILL
A new 999 video relay service The House of Commons the principle of the Bill and
which could potentially save will debate the need for BSL allow it to proceed for
at least two lives a year will be legislation in January after a further scrutiny.
introduced for British Sign backbench MP introduced a RNID has been working
Language (BSL) users by BSL Bill. as part of a cross sector
next June, Ofcom confirms. Rosie Cooper, MP for campaign group led by the
RNID has welcomed the West Lancashire, was one of British Deaf Association
news, having campaigned 20 MPs drawn in the Private (BDA) to campaign for the
with SignHealth and the UK Members’ Bill Ballot, which introduction of a BSL Bill.
Council on Deafness for the allows backbench MPs to Between now and January,
999 emergency phone line to bring forward a piece of we will engage with MPs
be accessible to BSL users legislation for consideration. and Ministers to reinforce
since 2019. She used the opportunity to the importance of the
The video relay service propose that BSL is legislation, and the difference
enables a deaf person to make recognised in law as a it could make to the Deaf
a video call to a BSL language and that the community. We will also
interpreter, who will then government publish guidance support the Deaf community
FIGHTING YOUR CORNER
relay the call via the phone to relay service and asking for and plans to ensure that Deaf to lobby their MPs and have
the 999 call handler. feedback from signers can access services their say on the Bill.
Some of the details will be telecommunications Rosie Cooper, and receive information in Although it’s unlikely that
finalised over the coming providers and also the Deaf their first language. Rosie’s Bill will make enough
months but here’s what we MP for West
community. We set up a The Bill will receive its progress to become law (her
know so far: How we’re campaigning to bring down the barriers Facebook group where BSL Lancs (below) Second Reading 28 January, place in the ballot means
›T he service must be our communities face in society users could share their in the House of at which stage MPs will have there is little chance the Bill
available by 17 June 2022 experiences and feedback Commonso to decide whether to agree will be passed in this session
› I t will be available through ›A ll BSL interpreters will be Until now, SMS and text relay and over 4,000 people joined. of Parliament), this is still a
a mobile app and website registered and have services were often the best There was overwhelming great opportunity to
and users will not need to appropriate experience option for Deaf people support for providing BSL highlight the needs of the
register in advance ›E mergency text relay and contacting 999. English has a access to 999, and ensuring Deaf community. RNID will
› I t will be available 24/7 and emergency SMS will completely different structure equal access for all to use this to work with the
completely free to use continue to be available. to BSL, so reading and emergency services. BDA and other charities to
writing in English can be We’re so grateful to all of build support for the Bill in
difficult for BSL users – and you who provided feedback Parliament and to influence
especially in a stressful or and helped us to achieve this policy changes that make real
“We are thrilled with Ofcom’s decision to make dangerous situation. This can
lead to delays in getting the
life-saving change. We’ve
encouraged Ofcom to keep
and lasting improvements to
services for BSL users.
999 accessible in British Sign Language. We appropriate support, which working with the Deaf
Photograph: Shutterstock
can have life-threatening community until the service
are proud we have achieved something which consequences. is up and running to ensure
In response to our petition that it’s fully accessible. We Stay up-to-date with all our campaigns
will ultimately save lives.” Roger Wicks, our Associate of 874 signatures, Ofcom ran will continue to share and find out how to join our Campaigns Network
Director of Insight and Policy, is grateful to everyone involved public consultations setting opportunities for you to have at: rnid.org.uk/campaign-with-us/
out the case for a 999 video your say along the way.
6 RNID I AUTUMN 2021 7
Information
A gift that keeps on
GIVING “
I have always been a very sociable, people- With live cultural events suspended, I’ve been
loving person. As a music teacher, being able spending a lot of time on YouTube enjoying
to organise and motivate people was an extremely performances of familiar music. I’ve found lots of free
important aspect of my life and the kind of activity downloadable music scores online and they act like
that made me thrive. subtitles for the music, so I can read what’s going on
From around 1975 I had increasingly intrusive in a performance.
tinnitus, followed by the loss of high frequencies in My cochlear implant makes all this possible and
1990. Just over a decade later, I became profoundly everything in my life so much easier. When things
deaf. For years I struggled with hearing aids and it was return to normal, I just hope that many more people
David Leader from our gifts in Wills only when I received a cochlear implant in 2006 that I can experience the life-changing benefits of an
team explains why including RNID in became truly aware of the importance of the research implant.
projects funded by RNID. That’s when I decided to That’s exactly why I have left a gift in my Will to
your Will can help change the future leave the charity a gift in my Will. RNID – so that research into future technologies can
I
I am very thankful for my cochlear implant and for continue, eventually allowing others to regain the
the positive impact it has had on my life. soundtracks to their lives.”
I’ve been especially grateful for it during the Stephen
joined the team at RNID in April 2021 because us and shares his personal story of hearing loss and pandemic. When everyone is wearing a mask,
lipreading becomes impossible so, apart from
I have a close personal connection to hearing how RNID has improved his life. We’re all extremely
exercising more often and enjoying green space, my
loss. In my short time at RNID, I’ve already seen grateful to Stephen and others who have left us a
wife and I have stayed home. Life online has become
the incredible difference that gifts in Wills make to gift in their Will and helped to improve lives, both even more vital, so we can all keep in touch through
people who are deaf, have hearing loss or tinnitus now and in the future. Zoom and all the other amazing ways that the
and, of course, it’s a really touching and inspiring If you would like to know more about Farewill, internet provides.
way of giving. As we plan for research projects that leaving a gift in your Will, or any aspect of RNID’s
run long into the future, we need to know that we’re work, please email giftsinwills@rnid.org.uk or
going to have the income we need to support these. call 0203 227 6034.
We also rely on gifts in Wills during times of financial
uncertainty, which I think we can all appreciate is
more relevant now than ever before. How a gift in your Will can make a
That said, my primary aim is to make sure that
difference:
everyone can easily make their Will, safeguarding
• Fund research into life-changing technologies, like
their own wishes, and their family’s future. RNID has
Stephen’s cochlear implant.
recently partnered with Farewill – the largest online
• Provide information and support to people who are deaf
and telephone Will-writing service in the UK* to help
or have tinnitus or hearing loss, to help them to
you with this. You can make, or update, your Will for
overcome challenges and live a full and happy life.
free with Farewill but we know that family comes
• Campaign to change attitudes and make society more
first and you are under no obligation whatsoever to
inclusive of people who are deaf or have hearing loss.
leave us a gift in your Will.
NOW AND IN THE FUTURE
* Farewill’s telephone service is available in England, Wales,
Stephen (right), a long-standing RNID supporter, Scotland and Northern Ireland. Farewill’s online Will-writing
explains why he’s kindly included a gift in his Will to service is available in England and Wales only.
›
8 RNID I AUTUMN 2021 11
Services
Check your hearing
HOW THE HEARING
CHECK CAN HELP
Our new hearing check is an
interactive tool on the RNID
website. You listen to a series
of recordings of someone
saying three random numbers
and key in what you hear.
Based on your answers, the
see an audiologist for a full
hearing test. You can
We’ve launched a free people with hearing loss.
They then used the
and encourage
your friends and
Gerry’s story
check suggests whether your
download a certificate of your
online tool which lets you resulting feedback to
hearing is within a normal loved ones to When I was in my 20s, I went to lots of rock
hearing check result to share check if your hearing is launch an improved version
range or whether you may check theirs, concerts and discos. I often had ringing in my
have hearing loss.
with your GP. You can also within a normal range in of the check on 17 May.
like Gerry (right) ears afterwards but, at that time, we believed
subscribe to information by
It’s not the same as a full
email about getting your just three minutes stay up to that the louder the music, the more you enjoy
hearing test with an WHAT NEXT
hearing tested. it! In my work as a lecturer, I often struggled to
audiologist but it’s a reliable To date, more than 24,000
If it suggests that you do hear students asking questions but I had no
way to find out if you actually people have taken our
not have hearing loss, it hearing check and around idea I had a serious hearing loss.
need one.
recommends ways to protect 57% of these either have Later, I was employed by the International
HOW IT WORKS your hearing in the future (or may have) hearing loss. Labour Organization (ILO), a United Nations
The test measures how well (such as using earplugs for This means we’re helping agency for social and economic justice. I spent
you can hear the numbers loud music events). people with early diagnosis more than 20 years journeying around the
over background noise. The and intervention that may world with the ILO.
level of background noise HOW WE MADE IT potentially mean less social
In 1993 I had a meeting with the Vice
stays the same, but the voice Our User Experience Team isolation and greater
developed the hearing check President of Guyana. When he asked
gets quieter and quieter. inclusion.
It’s an effective way to with HörTech, a company The hearing check is me for a comment, I was unable to
check your hearing because that makes technology for part of a wider service hear him over the noise of the air-
many people with hearing hearing aid users. They also called ‘Get support online’ conditioner whirring away in the
loss find it hard to hear worked closely with our with information to help background. I was mortified; it was
speech clearly when there’s audiology, brand and people get, or make the so embarrassing.
background noise going on. technology teams. most of, hearing aids. When I was on a home visit back
If it suggests you have The team developed a We’ll continue to add new to Belfast, I was invited to give a
hearing loss, you’ll need to prototype and tested it with topics to meet the needs
talk at a large conference hall
of everyone who might
with a high ceiling and terrible
benefit.
acoustics. The talk went well
“
but, in the Q&A session after,
Such a quick and easy way to check for hearing loss a member of the audience
– everyone should give it a go, even if you think your asked me a question and I
just I couldn’t hear him. The
hearing is fine. It recommended I get mine checked audience began to murmur and
giggle with embarrassment for
by a professional, so I will.” me – I could feel myself becoming
Karen, Wiltshire anxious and that led to my tinnitus ›
10 RNID I AUTUMN 2021 21
11
Services
Gerry believes
an online
hearing check
INTERVIEW I OPINION I DIARY I EXPERIENCE
could help so
many others
24,000
people have
taken our
kicking in. I asked the Chair if he could repeat the
hearing check
question for me. This was another occasion when I
wished the floor would swallow me up.
At the age of 52, I got my first hearing aids. If I’d
dealt with my hearing loss earlier, I believe it would’ve
saved me from many embarrassing moments. But
because my work involved travelling from country a genetic disorder, known as MYH9 – and that early
to country, I never had the chance to address it. I’m hearing loss is a feature of it. My younger daughter
convinced that an online hearing check, that can be may have this condition as well. She helps with my
used wherever you are, is a great tool to have. hearing issues and together we’re learning
After I retired in 2010, it was discovered that I had the fingerspelling alphabet and basic sign language.
On top of all of that, I’m getting older (now 73!)
and my hearing continues to get worse.
To check your hearing, go to: rnid.org.uk/ This online hearing check is a fabulous
HearingCheck or to get further support, visit: development for my daughter, and many others. It
rnid.org.uk/check will encourage them to get their hearing checked
earlier – and not wait as long as I did!
44 RNID
12 RNIDIIAUTUMN
SPRING 2021
2021
Interview
AN OFFICE JOB WAS NEVER GOING TO BE FOR ME. I saw the stress my Left: Mark living the
dad lived under; on a train before my brother and I were up for breakfast, outdoor life at his
often home after we’d gone to bed, always with deadlines to meet. It forge in Aylesbury in
wasn’t the life I wanted.
the Chiltern Hills
Dad always instilled in us that you have to earn what you want;
nothing comes for free. So, when I was 14, I looked through our local
newspaper to find a weekend job and saw an advert asking for help in
a stable yard. I started working there part-time and enjoyed teaching
young children to ride horses and ponies and being around the animals.
I’d thought about a career in the army but, when I applied at 16,
my medical flagged up a slight hearing loss. They could see from my
records that there was a history of hearing loss on my dad’s side of the
family. The college predicted firearm use would increase how quickly my
hearing deteriorated and they turned me down.
Farrier Mark Rudge tells
Margaret Rooke why the
I don’t wear hearing aids at work. It’s a dirty job;
outdoor life is the only hot and sweaty
one for him
Horse
My next idea was to become a vet but, in the summer holidays after my
GCSEs, I worked full-time at the stables, out in the sunshine. I realised I
didn't want to go back to school. As I started my A levels, I found myself
power
staring out of the window all the time. I didn’t want to be cooped up –
I wanted to be outside.
I dropped out and got a full-time job at the stable yard. I got to know
the farrier who came to care for and shoe the feet of the horses and
ponies. I liked the idea of this physical work and I found a farrier to take
me on for a four-year apprenticeship.
Photographs: Inigo Alcaniz
Dad wore his first hearing aids in his 30s. I remember everyone talking
loudly around him when I was growing up. For me, the cue to getting my
hearing checked was having to turn the TV volume up higher and higher,
to the point where it was becoming uncomfortable for anyone else in
the room. If there was a group of us sitting round a table, I’d struggle to
keep up with the flow of conversation. ›
14 RNID I AUTUMN 2021 15
Opinion
Whatever goes
money for my current hearing aids, and, when I told him I was good as it was, the expressions
against you in life, and I won’t risk damaging them. hard of hearing, his eyes on both his and his bride’s
you work through But it’s not just the money, it’s the
inconvenience of being without one
smiling, he ushered me to the
business class check-in, and
face, and their body language,
gave me all I needed to feel
it and keep on if it’s broken or if the battery goes.
If I only have one hearing aid, I feel
whispered something to the
woman behind the desk. From
warm and gushy.
The festivities themselves
doing your best unbalanced. At least now I have my
NHS aids as a back-up.
a distance she lowered her
mask, spoke slowly and made
were often accompanied by
loud pounding music. As I
One problem with not wearing sure I understood everything stood with other guests trying
hearing aids at work is that if I don't have eye
contact with the horses' owners, I have no idea IN PERSPECTIVE I needed to know. You see, I
told myself, people want to
to converse, I had moments of
resentment – until I noticed
they’re talking to me. If they’re on the other side of be of help. they couldn’t hear me either.
the horse and we have 500kgs of animal between This summer has been a During the flight I wanted I realised I was lucky
us, or if I’m working around my forge or anvil, then package of wonderful, to hear the dialogue in the because I, at least, had an
I have no chance of hearing them. Before I had my unexpected holidays, with me movies on offer as well as read excuse for why I was no longer
hearing aids, some people thought I was stuck-up managing preparations with the captions. However, I even attempting to talk.
and arrogant because they’d ask me a question the usual questions of how struggled, despite putting the Sometimes with a disability
and, if I hadn't heard them, it would seem like I'd will I hear/not hear, along earphones over my hearing it can feel as if what is being
ignored them. Now, with any new clients, I pre-warn with, what about Covid? aids. But lo and behold, there’s affected by it is the most
them that I’m partially deaf and ask them to either While managing the latter hope out there because I noticeable or memorable
I found myself learning to lipread to fill in the gaps. speak up or shout, and make sure we have eye was mostly a matter of discovered the entertainment thing about an event. Maybe
I started wearing hearing aids eight years ago, when contact so I can lipread. This saves embarrassment paperwork, getting tests and system can be paired with it’s after the last 18 months of
I was 35, but with everyone now wearing masks, it and miscommunication. taking care, I prepared my mobile phones. And so I’ll be being at home, missing family,
has shown me that, even with hearing aids, I still rely I think my other senses are more highly-tuned to hearing for travel by making writing Virgin Atlantic, and bouts of isolation but this
on lipreading to keep up with a conversation. make up for my lack of hearing at work. A horse can sure my hearing aids and suggesting they could go one trip reminded me that
I don’t wear hearing aids at work though. It’s a dirty hear something coming a long time before we can. earpieces were wax-free, the step further and stream the sometimes it’s everything
job; hot and sweaty. My ears can fill up with sweat I’ve learnt to read their body language, so when I’m charger was charged, its sound to hearing aids which outside of my disability that
behind where the hearing aids go into the inner ear working on them and I feel them tense up or twitch, domes new and not torn. are themselves paired with makes for a beautiful occasion
so it feels gross and uncomfortable. it makes me aware that something’s changed or Naturally I couldn’t prepare phones. They might even – the smiles, helpful gestures,
I work in Aylesbury in the Chilterns and tend to wrong. It’s so important to make sure you have that for all life's eventualities – but increase their customer base! clinking glasses, wide eyes
horses that belong to members of the public. I shoe awareness and understanding of animals before I discovered those depended During the wedding waiting for the vows to be
for most disciplines in horse riding: show jumpers, coming into this line of work – whether you’re a on how I perceived my lot. ceremony, the rabbi agreed to spoken, and goodbye hugs. An
dressage riders, and three-and five-day eventers. farrier, vet, dog trainer or working in a zoo. You have For example, as I wear my ReSound mini mic. overdue refresh, then, of my
As well as the sweat, I’m out in all the elements to be switched on around animals because any approached the check-in gates But I panicked when the perspective and all the ways
and I was having to get my hearing aids repaired or of them can be unpredictable – from a domestic on my way to Los Angeles for wedding couple said their ability manifests itself.
replaced constantly because of water damage. They moggy to a tiger. my nephew’s wedding, I froze vows, far away from my Jean Straus
had to be cleaned out from all the dust and other I was bullied at school but I inherited a mental with fear looking at groups of personal amplifier. I
particles in the air at work and it was costing me a fortitude from my dad: whatever goes against you travellers speaking animatedly shouldn’t have!
Dedicated to the memory of Nissim
fortune. It’s still £175 for each hearing aid on the NHS in life, you work through it. All I need to do is keep on with personnel. How would I My nephew
Marshall, who provided me with the
if you don’t look after them – if you break two or three doing my best and being the best version of myself. hear over them to get myself gave me my
subject matter for so many
a week, you’re suddenly paying out serious money. checked in? Until a uniformed own copy of his
columns over the past nine years.
Now I’ve gone private. I’ve paid a hell of a lot of www.facebook.com/MarkRudgeFarrier gentleman approached me speech and,
16 RNID I AUTUMN 2021 17
Diary
A fun day out? I haven’t paid full price.
Subtitling for audio and
video material seems to be
more widespread now, too.
within a couple of hours,
with the background noise of
hundreds of children playing
with loud experiments all
Vicki, who is severely deaf, is a working mum always assumed that such At a planetarium recently amplified by my hearing aids!
discounts were more for with my girls, they offered at My final frustration is lack
with two young daughters physical disabilities, in the least one subtitled showing of choice. I hardly ever go to
same way as blue badge every day, together with the the cinema or theatre, largely
G
oing out with the hear video or audio material, the staff member told me I parking. However, a couple of discounted ticket, which was due to lack of accessibility –
children as a deaf parent which can prevent me from spoke “too well to be deaf ”. It years ago, with considerable brilliant. Even if something and when I do, it’s really hard
is certainly an joining in properly with the really shook me up to be nervousness, I booked my isn’t advertised, it’s always to find subtitled showings,
experience. As well as all the children. More worryingly, in doubted, and feeling like I first disabled ticket for a day worth asking ahead of time. and almost impossible for
normal planning and packing some places, not having had to justify what was, at the out. I went prepared with my I’ve learned that, children’s films. I have,
for any child-related proper deaf alerting in place time, a very personal element PIP letter of approval somewhat counter-intuitively, however, found that some of
eventuality (can you ever have could end up as a safety issue. of myself. (Personal Independence my deafness can have an the smaller independent
too many snacks?), we have a A while ago, I got stuck on a However, that one person’s Payment, which replaced impact on my enjoyment of a cinemas more than rival the
whole other level of stress in broken ride, in the dark, at a response has been far Disabled Living Allowance), day out if there’s too much multiplexes for subtitled
order to achieve a successful theme park and had no idea outweighed since then by convinced that someone noise. On a family outing to screenings – and they tend to
day out. The extent to which what was going on as I incredible staff willing to go would (again) not believe me. an open plan science be far cheaper, so it’s not all
my deafness has the ability to couldn’t hear the voiceovers, the extra mile to help, or even I needn’t have worried – I museum, I was overwhelmed bad!
affect – or sometimes even or lipread anyone in the just to treat my access needs wasn’t questioned at all (my
ruin – a day out depends a lot room. Luckily, the children as perfectly standard and easy hearing aids seemed to be
on where we are going, but were on another ride with to meet. Something I’ve not proof enough) and off we Here’s my tips for enjoying a less stressful day out
also the attitude and family, but it was pretty scary tried yet, but which several went into the attraction, a as a deaf parent:
awareness of the staff. to feel that vulnerable, even deaf friends recommended few pounds richer! Plan ahead – is there likely to be an audio element? If so, have a look on
Outside trips like a zoo or when I just had myself to when going to get their For most places, such their website or email to find what provision there is in terms of subtitling
gardens are unlikely to be a look after. vaccines surrounded by mask tickets are full price, or or transcripts
major issue, largely because I’ve found that the deaf wearers, is to get a sunflower slightly discounted, and the If you’re likely to be overwhelmed by background noise, have a plan – maybe
there’s not a lot to listen to, awareness and basic kindness lanyard from ‘Hidden ‘carer’ ticket is free. Whilst I an hour or two inside an attraction, with a break outside if you can
other than keeping the of staff has a huge impact on Disabilities’ to flag up that you don’t really love the Look into discounted tickets if you qualify. Some places say the attractions
children safe and occupied. how included and welcome I have additional needs. These implication that disabled require specific proof, such as a PIP letter; others don’t
Anything museum or history feel. Several years ago, I had a are now widespread enough to people are dependent on a Consider getting a sunflower lanyard
based, though, is much more horrible experience the first be recognised in shops and carer, in reality I’ve found Do some research and consider less likely options for subtitled film
likely to cause me problems. time I ever asked for help in a other venues, so staff can that I’m normally with screenings – you may find some local hidden gems!
It can really spoil a day out if museum. When I requested a discreetly check what extra another adult when I take the
we get somewhere and I can’t transcript for their audio tour, help you may need. children out anyway, so it’s
A gamechanger for me less of an issue. I’ve also
recently has been my found that the saving is
Want to know more?
discovery that, as a deaf especially welcome in places
For more information on what benefits
person, I can often take which have a big audio
(such as PIP) you may be entitled to, go to
advantage of discounted component, as I feel less
our website at: rnid.org.uk/benefits
tickets for attractions. I’d annoyed about missing out if
18 RNID I AUTUMN 2021 19Interview
Entrepreneur Allysa
Dittmar, profoundly deaf remember, I’d depended on visual cues, sign family; my deafness is the result of a rare gene. My
since birth, tells Margaret language, and lipreading every day of my life to father, who worked in our family’s insurance agency
Rooke how a distressing connect and converse with others. Even for people for nearly his entire career, and my mother, who left
surgical experience who can hear, so much of communication is in the her career to raise my older brother and I, did all they
face. For me and others who have hearing loss, could to support me.
led to her co-founding
access to facial expressions is everything.
ClearMask, now employing What happened to me in that operating theatre ACCESS TO THE WORLD
250 people, and earning six years ago never left me. In fact, it launched But I felt different, growing up. It wasn’t easy being
her a place on the Forbes my career in public health and advocacy. I knew I deaf in a hearing family and in a hearing-dominated
didn’t want to go through another dehumanising world. I felt like the only outsider in many situations
under-30 list of top
experience, or have it happen to anyone else. There – socially, academically; even at home. Whether it
innovators to watch had to be an alternative to traditional masks that was at the dinner table or on the school bus, I knew
CLEARLY
hide so much of our faces away, remove human I was not like everyone else.
connection, and leave us questioning what’s being Looking back, the best way my parents supported
communicated and expressed. me was turning to the deaf and hard of hearing
I was born in New Jersey, USA, into a hearing community for guidance and support and choosing
sign language as my primary language. They aimed
to do all they could to help me thrive in both the
GOING
hearing and deaf worlds.
They decided to send me to a state school for
the deaf until I was five and then into mainstream
education with sign language interpreters. There,
Left: Allysa, aged 5, was
PLACES
my interpreter and I taught my teachers, classmates,
born into a hearing
and friends some signs. It wasn’t perfect, but it made
family. Below: ClearMask
a difference. I was determined to do well in school
in use in the classroom and so many people worked hard to support me.
But ever since I was young, I knew my education
experience was different. I had to put in more
As I was being wheeled into surgery for an operation hours to catch up on what I may have missed or not
a nurse told me quite suddenly that, due to an understood during my classes, all the way through
administrative error, the sign language interpreter from elementary to graduate school. I never wanted
I’d requested to assist me wouldn’t be present. I to miss out on anything. I view that as everyone’s
have been profoundly deaf since birth and this was fundamental right – access to the world.
shocking news, presented to me at a shocking time. Everyone who helped me during my education
Inside the operating room, I was unable to read the built my sense of confidence as a young deaf
lips of my surgery team or see the expressions on woman, capable of doing anything I set my heart
their faces. Their masks hid all of this. I presume they and mind to do.
gave me instructions, asked me some questions, After high school, I attended the Johns Hopkins
maybe said a few words to reassure me – but I University to study for an undergraduate degree in
couldn’t see any of it, not even a smile. public health. I was the first student there to use
The whole experience felt dehumanising and interpreters. It had never occurred to me to take a
unsafe. I was 23 at that time and, ever since I could safer option and choose a school more experienced ›
20 RNID I AUTUMN 2021 21Interview
Left: Allysa, President of ClearMask, with one of
her co-founders and company CEO, Aaron Hsu
with deaf students. I always wanted to go to the I don’t think I’ve ever Below: a physical therapist wearing ClearMask
best college, no matter how challenging it might be.
Many of my professors and classmates had never been as busy as I am
met a deaf student before, so it was a daunting and
isolating experience at times. I spent many hours
now, often working
and significant effort educating those around me,
but I realise this was teaching me to become a
80-hour weeks
well-seasoned and practiced advocate for others.
By showing professors and other students what I
needed, I was explaining what others needed, too.
While at college I faced the deepest tragedy in my
personal life when I lost my mother to suicide. We’d
been extremely close, and my world turned upside
down. I learnt in the worst possible way about the
importance of mental health and equal access to
healthcare, not only for deaf and hard of hearing
people, but for everyone.
This immense loss could have derailed me, but
I’ve always tried to turn my challenges into
something for the good, as difficult as this can and mass-production. We finally submitted our As soon as we saw the pandemic was becoming a schools, clinics, and social support groups. For so
sometimes be. product, ClearMask™ to the US Food and Drug full-blown public health crisis, our team met to come many different groups of children and adults, it’s
I continued with a Master’s degree and made Administration and received clearance in April 2020 up with a rapid roll-out plan. We made decisions in incredibly helpful to see the facial expressions to
the decision to study health disparities within the as the world’s first and only fully transparent mask just days instead of weeks or months. build rapport and understanding.
deaf and hard of hearing communities at the Johns approved by the FDA. We started shipping them out I remember taking a flight a day before the crisis I don’t think I’ve ever been as busy in my life as
Hopkins School of Public Health. I’d experienced a month later. was formally declared a public health emergency in I am now, frequently working 80-hour weeks. My
barriers in accessing healthcare long before my the US. I looked around and saw some people on the education has trained me well for working harder and
surgery experience. Statistically, deaf individuals KNOCKING DOWN BARRIERS flight wearing masks. It seemed so odd. I had the adapting constantly to the environment around me.
experience worse health outcomes than their It turns out that our biggest customers have not realisation that masks were going to become the Just like I did at school, I educate others on how best
hearing counterparts for many reasons, including a been the deaf and hard of hearing communities norm for some period of time and that this would to communicate and work with me on a daily basis,
lack of access to quality communication in medical but international, national, and state governments; be a significant communication barrier for all of us, through interpreters, Zoom, and the written word.
care. Nothing could be clearer: we need qualified hospitals who purchase them for paediatrics, older but especially for deaf people. More than 55% of Yet, even now, I have moments where I wish I
interpreters and culturally competent medical staff individuals and patients with dementia; schools communication is visual for someone with typical hadn’t gone through my experience in the operating
who’ve had appropriate training; elements that I’ve who use them for early childhood education or hearing. This percentage is even larger for deaf room. It actually makes wearing a mask difficult for
rarely experienced in my life. specific student populations such as children with people. For people who communicate through sign me, often reminding me of what happened six years
The other thing we need are transparent masks autism; and businesses who support a positive and language, access to the full face is vital. ago. But I’m so aware that millions have been helped
that show the full faces of caregivers, providers, safe customer experience and workplace. It’s been Altogether, we’ve sold over 17m masks worldwide by ClearMask and I know that this experience has
and family. At Johns Hopkins, I organised a team of incredible to see a growing, widespread recognition with our message ‘see the person, not the mask’. only increased my focus and resolve.
fellow students and alumni to design and create of how regular, traditional masks impede natural We’ve expanded from a team of just the four co- All my life, I’ve needed to knock down the barriers
one. Our team spent three years on fundraising, communication. founders to more than 250 staff. and challenges in front of me; to stand up for myself
research, customer validation and product Of course, as we worked to develop our device, We’ve also established a charitable side to the and others. As a result, I’ve been able to forge my
development. We made hundreds of prototypes the team could never have predicted mask-wearing business. We provide our transparent masks for free own path as a deaf person and make my own impact
to test our design for comfort, fit, anti-fogging, becoming universal because of the pandemic. to organisations that need them most, including in the world. www.theclearmask.com
22 RNID I AUTUMN 2021 23Experience
i
When Vera Brearey’s t’s 1977, I’m 24, and I’m standing in the kitchen to go), I booked some leave and joined a sign Deaf people, learning to sign, moving into the Deaf
of a London flat share. My friends are settling language class for a very intensive week. I loved community and being immensely happy with their
progressive hearing loss round the kitchen table for supper. They ask it. I loved how expressive it was. I was fascinated choice, but it was not for me.
started more than 40 years me how I got on at the hospital that day. “Not to discover how differently it was structured – a I love hearing. I love sound. I love it that I can hear
good,” I said. “They told me I might go deaf.” fully different language, not an imitation of English. birds singing, my boots scrunching through frost
ago, one of the first things I was in shock. I had developed tinnitus, gone Some of the teachers were Deaf and some weren’t, on wintry days, my washing machine telling me that
she did was book a short to the doctor, and eventually been referred to but we immersed ourselves in sign as much as we it’s finished the spin cycle (all lost to me for years
the Royal Ear Hospital. As far as I was aware, my possibly could for the whole five days. until I got my cochlear implant – I cried when I heard
but intensive sign language
ears were otherwise functioning normally but the And then? Well, I went back to work and life went them again).
training course. Although she hospital discovered that I’d lost a slice of high- on. I didn’t forget about signing but I didn’t follow I love being able to chat easily to almost anyone.
loved it, she didn’t pursue it – pitched hearing. it up either. I had other stuff to do; a life to get on Being fluent in a language shared by almost
“It’s quite possible this will get gradually worse” with. And that’s what happened for 40 years. everyone you meet means that you can connect
she explains why the doctor had said “and, given your age, you Of course, in one way, I was very foolish. If a with almost everyone you meet.
may end up severely deaf. You might not, but you crystal ball had appeared on that supper table, This Spring I had one of those moments when
might.” I would’ve seen that 40 years later I would be you reflect on all that is right with your world. I
A friend from those days remembers us profoundly deaf – no hearing at all in my right ear was queuing in my car at the entrance to a nearby
A life in
discussing if I would need to learn sign language. It and a bit of very low-pitched hearing in my left. The country park. The driver of the car ahead of me
seemed ludicrous; I could hear perfectly well. But doctor’s gloomiest predictions had come true. was having a long conversation with the woman in
the thought must have stuck in my mind because, the kiosk.
a few years later, when I first noticed there were FIRMLY ROOTED I was in no hurry, so I just sat back and watched.
things I couldn’t hear (bird song was the first Luckily (very luckily!), my hearing’s slow decline After a while, the woman in the kiosk started
the hearing world
was matched by many technological advances. dancing about, waving her hands in the air, then
When analogue hearing aids were not enough bent over double with laughter. Intrigued, when
for me anymore, digital ones became available, it was finally my turn, I asked her what had been
succeeded by ever more clever models and, going on. It turned out she and the woman in front
eventually, in 2017, a cochlear implant. of me had kept their spirits up on previous wintry,
As well as these devices, there were lots of Covid days by singing a different Christmas song
other technological advances, too, such as every time they met. Today’s song had been Slade’s
hearing loops, email, smartphones, texts, personal Merry Christmas Everybody.
listeners, Relay UK and Bluetooth streaming. Soon, I was bent double laughing too. We chatted
They all meant that I was able to stay in the for a while, I waved my barcode at her machine and
only place I’ve ever wanted to be – the hearing she wished me a great visit. The moral? For me, the
world. The experience of someone who loses ability to share a joke with a random stranger is one
their hearing in adulthood is very different from of the things that makes life worth living. I’m glad I
those who are deaf from birth or early childhood. made the choice I did.
Illustration: Christopher Nielsen
By the time my hearing loss started to have any
meaningful effect, I had a fully hearing life. I had
friends, a husband, hobbies, passions, a career –
Read more about Vera’s cochlear implant
all firmly located in the hearing world. I can’t even
journey at: www.morethanabitdeaf.com
conceive of what it might’ve been like to try to
To find out more about cochlear implants,
change that. I’ve read very moving accounts of
go to: rnid.org.uk/cochlear
people losing their hearing in adulthood, meeting
26 RNID I AUTUMN
24 SUMMER 2021
2021 25Experience
tinnitus
“
I try to do in my private life. I’ve become better
and me
at dealing with stress and listening to myself,
taking more breaks in everyday life. I have also
become better at accepting that I am a human
being; that it’s okay to have bad days. I’m more
than good enough. Before, I was more concerned
with striving for perfection. The fact that I accept
“
myself to a greater extent has made me stronger
It started about five years ago when I in dealing with other challenges. I have become
was in my early 50s. The sound came Hilde Beate Berg from Oslo in Norway better at taking care of my physical health, too.
as a marked, even, high-frequency hissing sound But this is not just a happy story about
tells Dawn Dimond how she deals
in the head. It came suddenly and remained as a everything being fine all the time. I’m just a
constant sound. It has not changed over time. with the condition person with good and bad days, like everyone
But in a way it has, since I mostly manage to else. I have a soundtrack in my life. It’s there but
focus away from it; then I do not hear it. it’s not what I choose to focus on. That’s my way
It happened in connection with a big of redefining silence.
transition in my life. I’d made a career change and I understand and empathize with everyone
was in the process of a new education and who experiences this condition. The most
re-establishing myself professionally. It was a big For uplifting stories on mental health, follow important thing is not to lose hope. There are
change; an exciting but also demanding phase. I Hilde on Instagram @hildebeateberg several strategies for getting relief from it and
was studying coaching and sports psychology and everyone must find their own way of coping.
I work now as a trainer in mental health. But I It helps to think that tinnitus is not something
think my tinnitus came as a result of many years very interesting, but intense, phase. However, I’ve aspects of myself, even what I defined as you are, but something you have, because we are
of stress – I used to be magazine editor. As a always been solution-oriented, so this was weaknesses. That approach helped me to go so much more than this sound. This ‘more’ is
person, I am also quite enthusiastic and energetic. something I just had to manage. more acceptingly into the sound. I chose to face what we can choose to give more space.
That’s a good thing, but I may not always have As a former journalist and now NLP (neuro- it rather than meet it with resistance. I worked I think good quality of life is, among other
been good at setting boundaries. linguistic programming) coach, I’m interested in on becoming friends with it and not see it as an things, about finding meaning in the little things
When the sound suddenly came overnight, I the power of words – how they define our reality enemy. At the same time, I focused on other we have around us, trying to be present in these,
became desperate. I have always greatly and can limit us. In the beginning, then, I was a aspects of myself that were more fruitful to focus taking care of our physical and mental health,
appreciated silence. I love to sit on a pier looking bit careful calling it 'tinnitus': it would be more on. I also became more aware of how I handled having a social network and not cultivating the
at the horizon or stroll in the garden, listening to defining and maybe stay longer, I thought. But it stress, and adjusted. I tried to go a little slower ailments.
the birds. This is where I get my energy. But continued to stay – and tinnitus was what I had. where before I’d be jogging between chores. Today, tinnitus is not a big part of my life. The
when the sound came, it was like being invaded, I decided early on that the sound should I mentioned it to my close family but, mainly, sound is probably as strong as before but, most of
with no way to escape. I’ve always slept well, but neither define nor limit me. In fact, I made an this was something I worked on for myself. It the time, I do not hear it.
Photograph: Marika Mørkestøl
now I would wake up in the middle of the night active choice: I chose to focus on the things I wasn’t that I meant to keep this hidden from the
or early in the morning, when everything was normally focus on in my life. I didn’t make a big outside world but, because not paying attention
quiet. Then it was difficult to fall asleep again. deal out of it. I understood that it would be a very to the sound was my coping strategy, it wasn’t Want to know more?
I got tired faster during the day, became more limiting life if I had to constantly focus on this important to talk about it either. The more focus For confidential information and support
sensitive to sound and also had concentration sound – it was something I had, not something I I gave it, the louder the sound. contact our Tinnitus Helpline: 0808 808
problems. With my studies and establishing was. In parallel, my studies gave me greater As a mental coach, I think it’s important to 6666; tinnitushelpline@rnid.org.uk
myself professionally all over again, this was a insights into myself. I began to accept more see opportunities in adversity. It’s also something
26 RNID I AUTUMN 2021 27Information
BIOMEDICAL I INFORMATION I TECHNOLOGY
READ my lips
During this last difficult year, when face coverings became the norm, many of us
discovered just how much we rely on lipreading, writes Molly Berry.
Face coverings have caused no to attend a class if it clashes without hooking them over
end of communication with work, as this is your ears, or knowing that
difficulty for many people – considered a ‘reasonable you’ve every right to ask
with or without hearing loss adjustment’ for employees people to lower their face
– and it’s driven home just with hearing loss. covering to speak to you as
how much we all rely on Classes are great fun, and long as social distance is
lipreading in certain situations. really do make a difference to maintained.
If lipreading is essential to how well you cope in a lot of But perhaps most
your needs, have you ever different situations. You’ll importantly, we laugh a lot in
considered improving your meet others with similar lipreading classes; it’s good to
skills, meeting new people and experiences, share tips and laugh together.
generally sharing your stories, find out what you’re Many of us have reassessed
experience of hearing loss? entitled to (such as the Access our lives in the last year, of
If so, now is the time to to Work government scheme course, and if you’re
enrol for a new teaching year to give you the equipment you considering a career change,
of Lipreading and Managing need to do your job), and how for instance, then now is also
Hearing Loss classes run by to get equipment to keep you the time to enrol on a training
Atla (Association of Teachers safe at home (did you know course as a lipreading tutor.
of Lipreading to Adults). that the fire brigade will fit It’s a great, fulfilling job, and
There are in-person classes you a smoke alarm with a one of the few where
nationwide, as well as online, vibrating pad for under your hearing loss is an advantage –
Illustration: C.White
so you can be sure to find pillow, to wake you if it should but there is a desperate
one that suits you best. If go off at night, free of shortage of qualified
necessary, you can even ask charge?). You will also learn lipreading tutors.
your employer for time off many communication tactics, City Lit college in London
and checking strategies that has a training course starting
can help a lot in everyday life in October and mostly home
For classes nationwide and for – such as wearing a sunflower learning, with only a few visits
Photograph: MED-EL
information about online classes,
lanyard to indicate you have a to the college.
go to www.atlalipreading.co.uk or
hidden disability; ways of Contact lipreading@citylit.
Atla’s Facebook page
wearing a face covering ac.uk for more information.
28 RNID I AUTUMN 2021Biomedical
R
esearchers around the world are making new safe. In the next, Phase 2, trial it’s tested on a larger How we’re fuelling the pipeline the wide range of types of hearing loss seen in the
discoveries about the biological causes of hearing number of people to check it’s effectiveness and assess • We’re funding research that will advance our human population. This means that researchers may
loss and tinnitus. We’re learning more every day the dosage needed. This can take up to two years. understanding of the causes of hearing loss and tinnitus – develop a treatment that appears very effective in their
about how the specialised cells needed for hearing In the third and final stage of clinical research, the knowledge that will fuel the pipeline with new treatments. laboratory models but then fails to live up to its
within the cochlea are formed, and how they actually treatment is then tested on an even larger number of • We’re funding PhD studentships and early-stage career promise in clinical testing.
work. This research is providing vital insight into ways people, generating the data needed to gain permission fellowships so that there will be more research scientists Tests are also needed that can indicate whether a
of potentially treating hearing loss and tinnitus. from regulators to market the treatment. This stage treatment is having a biological effect (such as a
able to work on advancing treatments.
But discovery research is just the first step. It can can take up to four years. change in the level of a protein in the blood). Without
• We’re working across the research ecosystem to identify
then take up to 12 years to turn these ideas into an such tests, researchers are left in the dark when a
approved medicine. First, scientists have to search Hearing treatments There are 79 treatments what may be blocking progress and find solutions to treatment fails to work as expected.
libraries of tens of thousands of molecules to identify currently in the pipeline for hearing loss and tinnitus speed things up. Perhaps the biggest challenge of all is identifying
those that have the desired biological effect. Even – and five of these are at the most advanced stage of people who have the type of hearing loss the
then, a selected molecule’s structure may need to be clinical testing (Phase 3). They include treatments for treatment has been designed for – there’s no point
fine-tuned to optimise its performance. tinnitus, Ménière’s Disease, sudden onset hearing loss Gene therapies There is growing interest in giving someone a treatment that regenerates sensory
Next, researchers will need to test the treatment in and reducing hearing loss caused by cisplatin, a developing treatments for genetic forms of hearing hair cells if the reason for their particular hearing loss
laboratory models to ensure that it’s safe, that it common cancer treatment. loss, with 13 gene therapies in pre-clinical is a damaged auditory nerve. Better tests are needed
protects or restores hearing in the way they expect, There are 11 treatments at Phase 2, including those development. The aim would be to introduce a to determine the cause of an individual’s hearing loss
and to figure out the best way of getting the drug into that aim to trigger the regeneration of damaged hair working version of the faulty gene causing hearing so that the right treatment can be given. This is a
the cochlea so that it reaches the right cells, at the cells in the cochlea. Hair cells are the ‘microphones’ of loss and would be particularly effective if someone is likely reason why many trials of tinnitus treatments,
right time, and in the right amounts. This ‘pre-clinical’ the cochlea; damage to these cells is a common cause of treated before their hearing significantly deteriorates. for instance, have been unsuccessful to date.
stage can take around five years and only after this can hearing loss, so being able to re-grow them would be a Several genes are being targeted including OTOF These challenges aside, there’s every reason to
the treatment move along the drug development real game-changer in restoring hearing. which codes for a protein involved in transmitting believe that, with a diverse range of innovative
pipeline into Phase 1 of clinical testing. The remaining treatments include seven at Phase 1 signals from the sensory hair cells in the cochlea to treatments in clinical development and an increasing
Over the next 12 months or so, the treatment is stage and 56 at the start of the pipeline in pre-clinical the auditory nerve. There’s also potential to introduce number entering the pipeline, new treatments to
tested on 100 healthy volunteers to check that it is development. a working copy of the gene that encodes a protein prevent some types of hearing loss, restore hearing
called connexin 26 (as defects in this protein is one of and silence tinnitus will become available in the next
the most common causes of inherited deafness). five to ten years.
Dr Ralph Holme, our Director of
In the
Research and Insight, looks at the Challenges ahead The good news is one in four
For more information about our biomedical
development of new treatments for new treatments for hearing loss and tinnitus have
entered the pipeline in the last three years. However, research and the difference it makes
hearing loss and tinnitus go to: rnid.org.uk/research
Pipeline
there are challenges to how fast things progress,
including how difficult it is in a lab setting to mimic
31You can also read
