Be a Community Organizer with a Cause | Beth Benedict | TEDxGallaudet

Be a Community Organizer with a Cause | Beth Benedict | TEDxGallaudet


Thank you. Thank you very much. And hello everybody. Everybody is looking at me
and thinking of me as an early
interventionist or a woman or whatever identity
you’re ascribing me. But I’m here to talk about
early intervention and also to talk about what your role in early
intervention approach is. We often talk about
it as a solution, but not about the “how.” And my answer
is community organization. You may be wondering what
that means and I will show you the definition
of a community organizer on the next slide. As it says here,
people who work together in collaboration to change
the world for the better. Okay? That last piece. The world for
the better is interesting. President Obama is one
of the first, one of his first jobs was a
community organizer in Chicago. He got very involved
in his community and tried to identify gaps with
agency, tenants’ rights. He worked for a small agency, fundraising about $70,000 to be
able to expand their mission and was able to
double it in size. Then he returned to law
school but he had never forgot his roots as a
community organizer. And I think he has in fact changed
the world for the better. I think this
approach can be applied to the field of early
interventionists. And the next slide will
in fact explain what our responsibility as
community members are. Here you can see it says
you have to know the ropes. You have
to know the people, the community in
which you will be working with. Their policies, information, within our boundaries. Remember it says
work together. Not “work for.” Work together. It really means
collaborating with each other. We have to organize
ourselves such as NAD, Gallaudet, ACSD, lots of
other organizations who have taken on the meaning
of collaborating and taking on hearing allies. We have many hearing
allies included in this community and they have
to be included when they say we’re working
together. The next slide will show
you a little bit more about education. This is often
a weak point. We can obviously all get
around the message that it should be done. But does it
actually happen? Are all of us on the
same page? Often that is
not the case. We do need to work
together to educate outsiders. And this is one
good example. This is why we’re
all here together. Today we’ve seen and heard
many good ideas that I’m sure you could get
excited about and get behind. But what would
you do next? That’s the
only way to accomplish some of these goals is to work
together. 90% has to be
followed up upon. So we can discuss ideas
all day, but when a meeting is done,
if nobody moves on any of the resolutions that
were proposed, if everyone says “it will
happen later” then it will never happen. We need 90% follow up. And if we don’t have that, we can’t blame anybody else
but ourselves. Yes? Yes, this idea of being
a community organizer can absolutely apply to
the field of early intervention. I think we are all aware
that early intervention has a long way to go. Right? Do you believe so? I’m seeing many heads
nodding, and I would agree with you. Even though we have come
such a far way, we still have quite a long
road to travel. Our job is not over. It is not finished
by any means. I’ll give you a brief
history. In 1990, all babies who were
born were required to go through a hearing screening. And I knew that in 1990
that bill was passed. And honestly I thought
that babies would be born and identified as deaf and
then they would be exposed to a sign language and
written form of English. So in fact deaf infants
would not be delayed and the instance of delayed
language would decrease. That didn’t happen. Babies who were born
deaf were identified and parents went through
a grieving process. As we heard today, 90% of deaf babies have parents
are hearing. The first deaf person they
meet is often their deaf baby. They have never been exposed to the deaf community before. Some parents think they
may have to take their child and send them to a group home or some other residential
institution. Deaf children themselves
who grow up never knowing another deaf
adult have no role model
to look up to. And some of them
actually think they’re the only deaf person
who walks the earth. I’m assuming those
experiences have happened to you or people
who you know. There are big gaps. We need deaf community
involvement. Parents need to see deaf
adults as role models. The information that
families get should be unbiased, it should be comprehensive, and it should be from
individuals who have a
specialized knowledge in the area of deaf
and hard of hearing education. Not all audiologists
are specialized in deaf communities
and the issues that plague deaf individuals. Around the United States, we have 200 audiological training programs, and one of them is here at
Gallaudet. There are only one,
perhaps two, who require those audiology students
to learn sign language. The rest? Zilch. That is a problem. So we have parents who have
never met a deaf individual before in their lifetime who have now found out that they
have a deaf child. Who are they going
to listen to? The audiologists
and speech pathologists. They are ready to accept
the information that they’re given without
questioning it or doing research on their own. Now while
that is happening, you see before I mentioned the Joint Committee on
Infant Hearing and the papers
they published. The JCIH committee gets
together and there are 2 representatives
from 7 different organizations. And they write positions. It’s almost a rule book that
audiologists must adhere to. If you ask
audiology students if they have heard of
a JCIH paper, they will say yes. It’s their rule book. For example, those 7 different
organizations write position papers. Most of them focus on a
medical model of deafness. So they talk about the American Association
of Audiologists, ASHA, speech and hearing
organizations. Those are the kinds of
organizations that are representative
for JCIH. AG Bell, another one. The ACD Council on Deaf
Education was the first who allowed a deaf
representative, and that was me in 2005. So six organizations that were not deaf friendly, and one being deaf friendly, comprised JCIH. And before a paper is
published, they must reach group consensus. That is voting power. And that’s where community
organizers can get involved. They can be working
behind the scenes. And I can give you
some tips on how to be an
effective community organizer. Before I joined the board, there were no signing deaf adults represented. And in their 2006
position paper — 2007, I’m sorry — focused on the hearing
infants screening procedure, but no early intervention
services were mentioned. And later on in 2013,
there was a — early intervention
services were added. There were
14 different goals. And I’m going to choose
just a select few that I think really tie
into my talk today. In that position paper,
it stated that children who in fact were identified as
deaf and hard of hearing should have access
to a service coordinator who specializes in knowledge
of deaf and hard of hearing. Is that happening? I ask you. Is it happening? Most degrees that
are awarded to these individuals are audiology degrees,
special education degrees. So that is not happening. That is one of the
goals that is failing. You could, as a community
organizer go back to your hometown and ask if in
fact there is anyone who is an early
interventionist who has a specialization in the deaf
and hard of hearing community and the
issues that they face. Nobody is asking for that. Parents aren’t
asking for that. Parents don’t know
to ask for this. Do we have individuals who
have these specialized skills? Who know
how to fluently sign in American Sign Language? Again, if parents are – nobody is asking
for these resources, they’re not
going to be provided. And that line says it all. To be honest, my dream
is that any program that would offer
speech, well any. All programs if we’re
talking about my dream. By default, they all
offer speech therapy. If they offer speech
therapy, then they must automatically
offer an ASL therapist. And those two individuals
must work together. Some people would rather
say a deaf mentor or a deaf guide, or a deaf
teacher perhaps. But insurance companies
will accept and pay for someone who is
called a “therapist.” I think it would be easier
if we said that person would be provided a speech
and language therapist, as well as an ASL therapist. It’s true. One of the last goals you
see here on the slide is that deaf individuals will
be involved in the EHDI system. Every state has an
EHDI advisory council. It was about 1991, or
since 1991 only eight states had this type
of representation. Which leaves 42 states that have yet to instate this
representation. And some of them have
three or four in the same state. Eight states is
better than none. But we have a long
way to go. And I hope that this
will in fact happen. Here’s a quote from JFK, “Children are our most valued
resource for the future.” So we must act now. Really actions should
have started yesterday. Clearly, the community
needs to organize itself. I’ve done my part. I am behind the scenes
working on policy and procedure. We have a rule book that
you can take advantage of. And now it’s your turn. What goals would
you like to see? What changes would
you like to see? If deaf people were to get
involved, what exactly would their role
look like? What would it take? What resources do we need? Those goals need to
be clearly defined. I think we are all ready
to work together to change the world for the
better and do that now. Thank you.

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