WEBVTT

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Lydia: A very critical piece of advocating
is being able toto

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be a good thinker, a good problem solver,
and to be able to come up

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with alternative solutions
instead of just saying,

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with alternative solutions
instead of just saying,

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“oh, no, I can't do that then
because this accommodation

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or service isn't available.”

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[music plays]

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Alice: A: know your facts.

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Pull up your history, pull up
whatever details you can,

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but you need to be able to show that

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timeline of why something isn't working.

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And sometimes it's actually being
able to literally identify

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who the broken link is in a chain,

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and knowing the details, knowing
where to go, if you can't afford it

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or they can't afford it,

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there are ways for things to be done
that are cost effective.

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There are entities
that give that kind of advice, naturally.

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You just need to know how to channel them
to it. But you've got to be able to do it

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without necessarily
being outrageously hostile.

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Although I have done that too.

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[laughing]

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Because sometimes
it's just a word game for them.

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But your words are my life.

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You know, when you downplay

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my access in an emergency room,
that could be the difference

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between a life outcome

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for me going there or not.

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If I'm going to a doctor
and they’re

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totally disavowing the fact that I know
my body and I know what I feel,

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they're missing a diagnosis
that might be evident to somebody else.

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I know that because I've done that

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and switched doctors
and found out that I was right.

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So you have to be able
to have your facts ready,

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have your arguments ready,

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and if you can't argue your case, well,

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grab a few people that you know
that can argue well for you.

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Lydia: I have had many,
many instances in my life

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where one thing didn't work
and I had to be willing

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and able to come up
with a backup solution.

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And I would also say that you can't depend
on the other person to do that

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because more times than not
someone that you may be advocating to

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is not going to be familiar
with DeafBlindness.

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And so you should be aware of

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options that you have and be

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prepared to come to the table
with alternative solutions.

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So I would just say that that is
a really important thing to consider

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as you're advocating and telling people
what you need from them.

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Rocky: I think oftentimes, you know,
we will teach

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people who want to become advocates,

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when we're training them, we'll say,
you know, “don't be

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confrontational,
be assertive, don't be confrontational.”

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You can be assertive.

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And I wholeheartedly agree that you should
be assertive over being confrontational.

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However, the best advocates
are not afraid of conflict.

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Sometimes conflict is just necessary.

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Back in the 1980s, for example,
we had a couple of people who are blind

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who were arrested because
they refused to leave their seats

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in the emergency exit row

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of airplanes because, you know,

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sighted people were allowed to sit
in those areas, but they weren't.

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Rosanna: Advocacy really is
summed up in persistence.

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You have to be persistent, be out there.

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Your actions will speak louder
than words in many, many cases.

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The most important thing
that you can do for yourself

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is to develop

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your own persona

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and develop your skills,
know what your skills are,

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and promote those skills
to the best of your ability

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so that you can be successful

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in the society that we live in today.

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Just because you may be DeafBlind,

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does not mean
that you can't be successful.

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The road to success
is out there for you.

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If you look for it and you work at it

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and you pursue your dreams.

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Rocky: You're going to have to
know what your needs are.

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You're going to have to know
what your needs are not, because sometimes

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we are offered accommodations
that aren’t necessarily necessary

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and that

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can also be very demeaning as well.

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You know, if you have a backbone,
if you have thick skin,

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if you don't allow yourself to be trampled
over, people will have respect for you.

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And that's true
if you are DeafBlind or not.

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People tend to respect you more

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if you're able to speak up
more for yourself.

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And as Rosanna said, if you're persistent,

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it can earn you a lot of respect
and a lot of trust.

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Alice: You have to have the language
to be able to do it.

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You have to have a sense of class
and to know when you need to step back

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and find another way or another person

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to go through to get the same job done.

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But giving up, don't do it.

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There's got to be a way.

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[laughing]

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[music plays]

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Rocky: I’m more appreciative than I can say that
we're having this roundtable discussion

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and this isn't just for us
as people who are DeafBlind.

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This is also for the general public.

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We've got to get our voices out there.

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Rosanna: Allowing us and giving us the opportunity
to be here and share this roundtable

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with all of you,

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it has been just a
wonderful, wonderful experience.

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Thank you so much.

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Lydia: I cannot put into words
how much this means to me

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that we are going to be able to be heard.

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Alice: This is really the real reality,
not the in-between

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and the cute little pictures that
you draw that you think is us.

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This is us.

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And only we can tell you.

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It’s just gravy to being able to

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put a little exclamation point on

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this is our life and we
should have the right to direct it

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to some degree that's going to be
meaningful and make us feel proud.

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[music ends]