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