Those excluded understand inclusion like no other
[Applause]
i was born into a silent world
where the only things i knew were my
family’s faces lip patterns
and visual gestures with the gift of
hearing aid technology
i was able to speak from the age of six
now i was so used to adult company
speech therapist
audiologist and the other consistent
support of my parents
alongside support in the early days came
some new hearing aid advancements
digital hearing aids so at the age of
nine with these new digital hearing aids
there were a lot of new firsts new
experiences
the first day i heard birds sing
leaves crunching sound of a zip being
fastened in the rustling of my autumn
jacket
all these new experiences at the age of
nine were so fascinating my confidence
grew
i was always brought up to communicate
my needs
to socialize with all and to never shy
away from any opportunity
my childhood was amazing
now at the age of 12 came some more
hospital visits
and to be quite frank this was really
normal for me because i was so used to
one-on-one appointments with doctors
consultants
audiologists speech therapists and now
eye specialists
what i didn’t realize was that my
initial eye appointments
actually meant i was going blind and
that i’d be registered deaf-blind at the
age of 12.
the day this hit me was one day i was
sat in my mom’s car in the front seat
and mum was driving
and she said to me can you see me
i watched my head round to look at her
and i said of course i can see you
remember thinking
what a weird stupid random question
and then she said no when you look ahead
what can you see of me
so i looked ahead and i described what i
could see
i said well i can see your hands
i was 14 at the time and i remember
thinking something is not quite right
because i looked round to find my mum’s
face and it was hidden
but from what i could see her face had
gone red and her eyes were wet
what i later discovered was my parents
found out i had usher syndrome
usher syndrome’s most common form of
congenital deaf blindness
combination of deafness with the onset
of retinitis pigmentosa
a progressive blindness that robs a
peripheral vision
the word blind haunted me for a while
then
especially after that tense car journey
with mum and as a deaf child too
going blind was my worst nightmare
at 14 15 those teenage years were a blur
i recall my education suffered and my
parents were frantically worried for my
support at school it was just not
working
now at senior school i had a teacher the
deaf and teacher the visually impaired
neither one of them had ever worked with
someone with with usher syndrome
now being deaf-blind is not deaf and
blind
it is a whole new disability
and it requires proper understanding of
for i was struggling to understand it
myself
there was virtually no support of this
except for at home
and that is when as a family we decided
that i’d be moved to a boarding school
for the deaf
where the support that we wanted was
promised
and i actually remember thinking i’m
going to be just like everybody else
i could not have been more wrong i was
bullied by both staff and students
and i’ve made to feel a burden because i
was not just deaf i was blind too
many struggled to accept this and in the
emotional torment i was in
i struggled too
now as a family we didn’t know who to
talk to
there’s such big charities who supported
many
but not people like me usher syndrome
was a condition that was virtually
ignored
and that is when in 2011 we set up the
mollywood trust
we want we didn’t want other families to
feel the same as we did
lost helpless misunderstood
we wanted to create a support system for
those living with us syndrome
and so we began devoting our time to
raising awareness of us
syndrome but not what we can’t do
what we can do with the right support
and tools
an example of this is due to research we
found many people with us syndrome
hadn’t been able to access text for a
while
so we began funding kindles
with every kindle we funded we asked
everybody to blog about their
experiences
there is one blog that always sticks
with me
this young single mum with usher
syndrome
with her new kindle with the ability to
change contrast and text size
for the very first time she could read
her children a bedtime story
this humbles me to this day
such little things like this make such a
huge
difference to people like me
now i feel my story needs to be told
because i am not
unique i am a patient not a condition
and i know myself better than anybody
i need to be listened to by you because
my story is an education i’d like to
share with you
i would like people like myself with
life-changing conditions to be a part of
your ethos
in treating patients i would like nhs
professionals
to consider how technology has changed
not just in my lifetime but in theirs
since qualifying
an impact made to enablement to ability
to communication
do not consider me as that poor
deafblind girl
unable to speak unable to hear if at all
and totally blind do not consider
speaking or acting on my behalf
speak to me i am a person a capable
person
a valuable member of society
i have not had choice regarding
technology
but simply to embrace it or to face the
exclusion many have had to
over the years thank you