My life, my choice!
“Small or big, I want to make decisions about my life, so do other disabled people. My life, my choice!”
November 7th, 2023
“Small or big, I want to make decisions about my life, so do other disabled people. My life, my choice!” Says Vincenzo (Vinny).
Viewers got a glimpse into the lives of people who use supported decision-making that help them live their best life. This included a presentation by Vinny and a video submitted by Noah, Lily and Isaac. All of whom belong to our Down Syndrome Community.
“When people with Down Syndrome do things, it’s called supported decision-making. When my sister does the same thing, it’s called chatting with her friends,” Vinny says.
“I like to talk to people about my choices. Sometimes I need more communication, or I might need someone to answer questions or explain things in more detail.”
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It's my right to make decisions for my life.
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Why it’s important for me to make decisions?
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to be independent to have a better life, to be respected.
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It is my right to make decisions.
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It show people trust me and know I have the right ability to make decisions.
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I have been making decisions since I was little.
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And when making them daily, some are small or some are big, but they are.
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They all help me to live a good life!
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I’d like to share some decisions that have helped me to learn and achieve my dreams.
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I wanted to learn how to ride a bike.
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I achieved you must achieve them.
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I received an award from NZDSA.
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I decided I want to be a leader.
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A leader and speak up for people with Down Syndrome so I became a
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student councillor I did what my friends did at school.
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this is this is my beautiful wife Rachel.
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We
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started dating then I proposed and in we got married in Havelock North
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I attended the NZDSA self advocacy workshops.
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I am now the third member of NZDSA membership university group.
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I decided I wanted a car.
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My sister bought a car together.
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Community is important to me.
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I decided who I’d be friends with, and what social events I attend.
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I started my own business.
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All sell on Trade me, and I and have other business ENZO, where I make truffles.
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This is my favourite.
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I have developed my business into a cafe for in the future.
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I am in the final stages for my barista course.
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Rachel.
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And I live in our own Flat.
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We made
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decisions a about where we live and our home so It meets our needs.
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My Life!
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My choice!
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Small or big.
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I want to make my own decisions about my life.
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So do other disabled people.
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Sometimes I need support and that’s okay.
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Supported decision making, just like you, sometimes when I need to make decisions, I
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like to talk to people about my choices.
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Sometimes
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like you I need more communication.
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Or like you, I might need someone to answer questions or explain things in more detail.
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When people with Down syndrome and do things, it is called supported decision making.
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When my siser.
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She does the same thing.
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It is chatting with her friends.
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For both of us.
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It it's about making choices and having control over our own life.
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It allows me to have more choice and control of my life.
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And I get to make decisions that will allow me to have a good life!
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o Thank you, Ka kite ano!
Vinny reminded people, like everyone else he’d been making decisions since he was little, and it’s always been about having choice and control over his own life. From small decisions like red shoes and sophisticated bomber jackets to larger ones like getting his own car and proposing to his wife; Vinny has made them all.
“I decided I wanted to be a leader and speak up for people with Down Syndrome, so I became a student councillor. I am now a proud member of the NZDSA membership university group.”
“I make truffles and sell them on Trade me, and I am in the final stages of completing my barista course.”
Don’t be surprised if you see Vinny running his own business, as he shared his dream to one day manage his own café.
“It’s my right to make decisions for my life,” he says.
Feeling empowered and inspired? Check out our friends Lily, Noah and Isaac talk about how supported decision-making has shaped where they live and work.
I'm Lily and I live with my brother
Noah hi I am Noah I love my sister
Lily we wanted to talk about making
decisions okay
nowah what are easy decisions for you um
the easy decisions is to go to
CJ y uh um
get morning have
breakfast and get on for a time yeah so
for you it's easy to follow a routine
yes do the same thing every day yes
yeah okay that's good so you don't have
to make decisions no no do
you so here we are Indian
star one decision they had to make was
what shall we
eat what did you choose n um a lamba do
you like
lamba yes do do you always choose
Cora yes I always choose Cora and Lily
what did you choose I just wanted to
have a different n bread to the other
all right soly chose different n bread
to everybody else
Choice
noral those are easy decisions but what
about hard decisions like going to work
where you live if you want to get
married and things like that so let's
look at work you're working where did
you work I work at farmers in Pon I work
doing unpacking L lerie do you like
working yes I do
when you got your job yeah do you know
how did you get your job by Fe I think
it was Phoenix when I was at work okay
so somebody helped you get the job yeah
cuz I remember I was at school when I
did work X yeah so you did some work
experience yeah yes and then got a job a
bit later on yep Y how many days a week
do you work at Farmers I work on Tuesday
Wednesday
and Thursday so how did you decide how
many days a week you work um I kind
remember but I remember talking to one
of the bosses that thought was about
okay so did you decide was it a joint
decision that so your decision to work
there was helped by Phoenix and other
people and your work experience yes and
your decision to the the number of days
you do is really bit about what you can
manage isn't it because you get a bit
tired if you worked all day all right so
guys where are
we we are in
t any decisions we made about coming on
this holiday Noah can you think um it's
to celebrate me 35th birthday yeah so
how did we decide what to do
um I think we had some help with our
parents and we were thinking what we
would like to do like one of them we
decided to watch people do bunny jumping
before did
you make decisions about what to
bring yeah I decided to bring my iPad
yeah so did you pack your bag um I had
help with my M to pack what I wanted to
pack because just s sort of clothes that
I haven't wore beforehand but I am
wearing okay so sometimes you need a bit
of help with that yeah yes did you bring
some calendars with you nowah yes you
did do we really need a calendar on
holiday no not did you bring your razor
charger no no should you have done yes I
thought I was Prett a good jump her but
I didn't that wasn't a
good okay nowah we're going to talk
about hard decisions
now okay okay so I remember when
you decided you going to leave home out
of time I'm out at school ever since I
moved into to my house yeah so you
decided that you wanted to not live with
your parents any longer is that right
yeah deci and we had to decide where is
Noah going to
live and who is Noah going to live
with I live in a flat as I live with my
sister you do yeah and did you decide
you wanted to do that yes yes and did
Lily want to do that yes yes I did yeah
so Lily was quite happy so fortunately
you're very happy to live together
in your own flat aren't you your own
house actually so that was a big change
for Lily but it was a change for me and
that was quite a decision for you when
mom was trying to um say to me it would
be really cool if you live with your
brother Noah and try to S me
to live with Noah cuz the bo is bigger
for you than the I had before him when I
was in Alex's house so was a bit of a
joint decision really a little bit of
persuasion there yeah it was yeah
enticed with a big bedroom so I thought
why not yeah good decis so one thing
that's quite difficult is deciding who
your helpers are going to be yeah isn't
it yeah it is it is so we sat down and
we
said do we want supporters all the time
didn't we yeah we had that conversation
so what did you decide
we wanted them during the week yeah so
when during the week we had Monday to
Thursday to start with so we changed
that didn't we because why did we change
that because we realized that Noah had
um CJ's on highay and he needed support
to get out of bed cuz sometimes he
didn't get out of bed did you know he
was sleeping yeah sleep in so that's why
so Noah made the decision to sleep in
not a good decision so they were kind of
joint decisions were they because we
decided how many days you need somebody
and when you need them because you need
them to help you with meals yes and you
need to help you get ready to go out in
the morning yes yeah and if we don't
haveone there what
happens a bed so we also have
Isaac who is far more limited than Lily
and Noah yeah so for Isaac to be
involved with decision making is quite
difficult are you good at making
decisions yep which way should we go now
which way we going to go we're going to
go that way
yes yeah yes we made a decision we're
going that way isa's decision making is
limited to
deciding what do you would like to
eat but that's usually
based on a choice of one or two possible
options would you like food would you
like
banana or
chocolate toate which one would you
like b banana okay there you go I hope
that this has given you some idea of how
we make decisions with Lily Noah and
Isaac we try to involve them as much as
we can but recognize that decisions are
often limited by their own St
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