Transcriber: Thomas Horejes Reviewer: Denise RQ
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Hello again.
The topic I would like to discuss today
is this notion that deaf people in fact pose an economic burden on society.
I believe that to be a fallacy as a deaf person
that we somehow create an environment
where lots of money is being spent on us as a population.
["Hearing impairment and deafness are serious disabilities
that can impose a heavy social and economic burden
on individuals, families, communities, and countries."]
If we look to the World Health Organization,
we know them to be leaders in gathering data throughout the world.
On their website, I was able to find information
that pertains particularly to how they view deaf people.
They view us as being deviant in many ways.
But interesting, I came across a quote
that speaks to the fact that as a population,
we are in fact, an economic burden on society.
And again, this is a source that's very reputable
and looked to from people around the world.
That particular quote led me to look at the amount of money
that's actually spent in creating this economic burden if you will.
In my research, I've come across four social institutions
that lead to and support this notion of deaf people being economic burdens.
The first is that of the area of research,
second is technology,
and third, special education.
- deaf education is of course a part of the overall special education funding -
and last, social welfare systems,
so Security Security and VR just being a couple of examples.
I want to talk today about how money are spent in these four social institutions,
and then present to you a different perspective
on our being an economic burden on society.
Interesting to see, that as an individual,
about 300,000 dollars is spent on a person who is deaf.
If you add that up times the number of deaf people in the world,
we can see almost a million dollars that is being spent
on people who are deaf.
I really have to question those numbers
and understand exactly how this money is spent and why;
which leads me to the discussion of my first social institution.
["Similarly, the definition which has dominated
medical models of deafness is of deafness as a pathological condition.
Deafness is viewed as deviation from the normal, healthy state,
and emphasis is placed, therefore, on remediation and normalization,
an overcoming hearing loss to restore 'normal' functioning."]
Research has been done in many different areas,
always with the goal of normalizing people who are deaf.
There is this notion that deaf people are somehow deviant from the norm,
that we're markedly different from that norm
and it's important that we be normalized so we're like everyone else.
Quote, unquote "normal".
But does anyone really know what normal means?
And is it worthwhile spending all kinds of money to ensure
we become normal citizens?
Those are the kind of questions that I'll be addressing in my talk today.
["I'm pleased to present the President's budget request
for the National Institute of Deafness and Other Communication Disorders (NIDCD)
of the National Institutes of Health (NIH)."]
If we look at the amount of money that's spent on research,
we can look at FY2013 budget numbers to better understand the exact amount.
The National Institutes of Health, NIH,
focuses primarily on the research of people who are deaf
with communication disorders being their focus.
The head of that research unit shared publicly
their appreciation of receiving funding in FY13
that amounted to 400 million dollars.
400 million dollars having been spent on fixing genetic deafness
and looking at various auditory and neurological ways to restore people
to a state of normalcy who are deaf.
So remember that number: 400 million dollars.
Let's move to the next social institution.
["Many unresolved issues remain for clinicians as they characterize
auditory performance in a newborn who fails hearing screening,
design intervention strategies to optimize communicative success,
and ensure that a "medical home" exists for the infant with hearing impairment."]
Actually, let me go back a moment to research.
The whole purpose of these fundings being spent on research
is to find deaf infants, identified early on at birth
and to immediately intervene in their lives by spending money
to get them to a state of being hearing or normal.
This is something that the director of the research center
actually stated as being the goal.
So now onto the next social institution.
The second is one is technology.
We know that for cochlear implants,
the cost for adults is about 40,000 dollars,
and 20,000 dollars, for children.
And of course, that doesn't include
all kinds of rehabilitation and speech training.
And it varies by individual,
and I don't have a specific in terms of the number of individuals
who have been implanted,
but we can imagine the numbers that are out there today,
multiplied by 20,000-40,000 dollars each.
We can get a sense of the amount of money spent on this technology,
all again, with one specific purpose.
And that purpose being to do everything possible
to normalize individuals who are deaf
so they can be in the line of what is normal,
within the range of normalcy.
So these funds are being spent to fix individuals,
to provide them with technologies, to make them normal.
Let's move onto the third social institution,
that being one of education.
The Department of Education website has budget-reported,
and it is public information.
And on that budget, I was able to take a look
at how much money is actually spent on educating deaf children.
It's 11.5 [billion] dollars; I want you to keep that number in mind.
Now we know not all of those funds go specifically to deaf education,
but I think it gives us a good sense of how much money is actually spent:
11.5 billion dollars.
Now, there are also very specific programs within those budgets that are line items
that are designated primarily for deaf people.
Deaf people in special education settings,
we can look at them in a preschool environment
and find that money are spent in that area
that amount to roughly 400 million dollars.
So we have a total of 12 billion dollars being spent
predominately on providing education
to children who are within special ed deaf education.
Literature shows that deaf education success
in these environments is questionable.
So much money is being spent on speech training,
and technological needs in the classroom,
on auditory processing, and auditory training,
that the amount of money being spent,
may not, in fact, equate to success as a result of all those efforts.
We've looked at vocational rehabilitation, at some numbers on education,
and we know that vocational rehabilitation supports education.
In fact, we have about 3 billion dollars that have been spent in this area.
Social Security can be compartmentalized into two different pieces:
SSI, with about 50 million dollars being spent in that arena,
and SSDI, where we have about 150 million dollars
being spent in SSDI payouts.
So with all that I've shared today and each of these different arenas,
and we're going to remove technology from them,
because again, we don't have the exact figures
based on how much money is spent for cochlear implants.
If we look at just the three remaining sections,
we can see that 19 billion dollars are spent on people who are deaf.
So if you take a step back and hear that number,
it certainly does seem as if we are an economic burden to society.
Unquestionably, that night be seeming to be true based on the numbers alone.
But again, it's important we clarify what this money is going towards.
We understand research is related to deafness,
and we understand that deaf education and in a special education arena,
all of the funds are then, specifically designated to deaf education,
so we could probably say this is a rough figure
in terms of the amount of money that is spent on deaf people.
And I'm not in any way disagreeing this is an exorbitant amount of money.
I am however wondering about the perspective that's been used
to better understand how this money should be spent.
Again, I believe it comes from a medical model and an approach
of a pathological view of us being abnormal.
Now do we see ourselves as being disabled?
Deviant from the norm, and in some ways, somehow unorthodox,
and straying from what should be normal?
Absolutely not!
We. as deaf people, see ourselves as being very self-functioning and secure.
But rather the frame we see ourselves in
is not from one that we need to become normal like everyone else
- and unfortunately, all of the money that's been spent to date
has been spent on creating that about us,
creating this process where we can be normalized -
but if we shift that focus, shift that paradigm,
I believe we can propose an idea
where less funding could be spent with greater results.
My ideas of how we might shift those funds for a more optimal result
is looking at those billions of dollars that are spent
and being used in a different way.
Not being used in a way that would help us become normal
as is defined by the larger society,
but instead, using those funds to do research,
not on the hearing mechanisms, on restoring people's ability to hear,
but looking at how we, as deaf people, as visual individuals,
can contribute to the understanding of the visual nature of who we are
to a greater society, to all humankind.
That in fact, would save money as opposed to cost money.
And help people better understand how much we are all alike as human beings.
Now let's look at deaf education.
Literature to date has really focused
on speech training and auditory oral training;
really focusing on this idea of dependency,
that deaf people are in fact a burden as a result of their inability to speak.
But what if instead, we focused money on how deaf people can learn
in a bilingual, bi-cultural environment,
and if speech is accessible, of course, add that,
but let's approach education in a different way.
By doing so, I think we could see a heightened quality of life.
When the infants are first diagnosed as deaf,
I think very often what happens
is the goal is to help them become hearing,
but if we approached this differently, and provided services and support
in a clearinghouse way,
that parents who going through a grieving process
with a recently-diagnosed deaf child
would get support they need in their home environment,
would have access to cultural information.
Everything would come to them in their home environment
and they could access services and information helping their child
to be much more attuned and more capable of having success later on in life,
having that early foundation well-formed.
We know the quality of interpreting services
for the students who are in mainstreamed classrooms
is insufficient.
Money could be spent to provide interpreter training programs
with the services they need to better improve
the quality of interpreting services
that are given to these children in educational settings.
In the last area of technology,
we've talked about cochlear implants and other kinds of devices,
but what if instead we looked at technology in a different way,
we looked to see a way that manual and visual tracking could help us
better understand how people navigate the world around them.
All the money that have been spent in certain ways of understanding research
could be seen much more differently if we took it from a visual perspective.
Now all this to say, is this the best way to approach this situation?
I propose that it is.
I think we could make people's quality of life much better,
that people's well-being as deaf individuals would be such
that they would have self-confidence in themselves,
they would see themselves as equal citizens
with everyone else in society.
We understand that if people are given their needs
and their needs are met early on in life,
they are able to be successful, have successful careers,
pay taxes, and lessen that economic burden
that seems to be existing, and thereby creating a win-win situation,
rather than having a pathological medical view of us
as being economic burdens,
better to understand that this perpetual understanding
has been promulgated by the larger population,
and it is indeed, a fallacy.
Thank you very much.