WEBVTT

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Rocky: Advocacy could have
several different definitions.

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Years ago, I had
a vocational rehabilitation

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counselor who once told me that
if I was not an effective self-advocate,

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that people would treat me like a rug.

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And indeed, that is true.

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[music plays]

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Rosanna: Advocacy is something
that's really important,

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especially if you are DeafBlind
or visually impaired.

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It is different in terms of advocacy
for the community and for yourself.

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But they do both intertwine at some point.

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And I do feel that

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it is critical to become
your own advocate.

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Alice: My definition of advocacy
is equally knowing what you want,

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what your needs are, but also knowing how

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to convey it to people
that may not know what that is

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in a way that's not going
to get their back up.

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And to help them be more willing
to provide such accommodations.

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Rocky: The thing with
DeafBlindness is that it's a very

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low incidence population.

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And so we're a very small community,
we're very close knit.

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And so when we're trying to go back out
into the hearing-sighted world

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and people aren't always going to be
as understanding and in some cases

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not as accommodating,

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we have to know how to explain our needs
and those things that we may not need.

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And so we have to advocate sometimes
in the blind community because

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there are significant differences

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between blindness and DeafBlindness.

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Alice: I myself am the president of National
Federation DeafBlind Division, so...

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advocating for the DeafBlind
within the National Federation

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is part of what I do continuously.

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And sometimes it's just making them aware

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that we still use the
same blindness skills.

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Mostly, some are different, but also

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the essence of us is...

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...different.

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You know, it's not insurmountable.

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It's just different.

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And so that's part of what
my role is as president.

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It's also my role to try and find

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ways that I can be helpful
in my own state,

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in my own community, at work.

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So it's cooperating, it's inventing,
sometimes it's just giving guidance

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to what mediums really work for us

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and trying to keep eliciting

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an open door for conversation.

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Rosanna: It's interesting
that all of us agree that,

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you know, on the definition of advocacy
as knowing who you are,

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knowing your skills,
knowing what you want to do,

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and, you know, advocating for
how are you going to do it.

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And I really agree

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with what Alice has said
and Rocky as well.

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In being an active member of the American
Council of the Blind as well,

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a lot of the work that I do
is very similar to what Alice does

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And one of the things that I was very much
involved in was the right to vote.

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And when I say
the right to vote, it's not that

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blind people
didn't have the right to vote,

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but they didn't have the accessibility
to vote on their own.

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Getting that to the point where

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a DeafBlind person
or visually impaired person

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could walk up to a machine
and cast their vote privately.

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And that's what advocacy
is really all about.

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What Rocky said is really true.

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It's a very small type of community,
but that community needs to stick together

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and work together because that community
is what supports each other

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to do their best and
put their best foot forward.

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[music plays]

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Rocky: It is still possible for

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people with disabilities and
in the DeafBlind community to be isolated.

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That can happen through a lack of access
to communication,

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through a lack of access to technology.

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And I think what happens

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a lot of times is when you create
the opportunities and the right attitudes

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about advocacy and about DeafBlindness,

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that will allow the DeafBlind community

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to be rescued from the closet,

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so to speak, you
see that they will blossom.

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You see, once they're integrated,
I mean...

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the research on this too, has been,
you know, overwhelmingly stated

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that when you integrate
people with disabilities

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into the regular,

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the broader society,

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they do a lot better,

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their self-image
and self-esteem is improved.

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And I can say for myself
that that's definitely the case.

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And I think that many other people
who are DeafBlind can say the same thing.

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So that's also a very important point.

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We have to get ourselves integrated
into the society as much as possible.

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Alice: And some of that is just being open

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to the fact that we have the right to be.

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You get the perception that it's
not our place to speak for ourselves.

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But from where I sit, it's not necessarily

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But from where I sit, it's not necessarily

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the place of sighted

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people always to be our voice
because they're not living our experience.

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I like that they help me.

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I like that they collaborate,
but like some of the things

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that happen in the medical field,
if they don't know that we have a mind

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and that we actually do
know what our bodies are doing

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and that we are fully aware of

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some illness or whatever
that they're continuing to ignore,

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we still have problems.

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And I have found that
that in the medical realm especially

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is very problematic, especially
if you don't have somebody else

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that you can drag in
to be your voice and say,

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“Listen to her, she
knows what she's saying.”

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Because if you come into my world,

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I'm gladly opening me to you, and
it doesn't feel that way the other way around.

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So you always feel

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like somehow you're sliding
through the back door to get what you need

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and in this day and age,
it’s real tough to have to endure.

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[music ends]