(This is a long document but well worth the read. Information
about Scott's books can be found at the end of this email. Please
feel free to share.)
Scott Stoffel's Speech "Listen to the Vision"
(AKA: Deaf-Blind Monsters)
November 2, 2014
Fourth Anniversary of DeafCAN! Banquet
For more information on DeafCAn, the SSP program or to make a
SCOTT STOFFEL: Okay. Testing, one, two, three. All right.
I am Scott. I will be your Deaf-Blind speaker for the evening.
So we have a Deaf-Blind person up here speaking to you.
What are you expecting me to say?
Supposing I was Helen Keller, the most famous Deaf-Blind person
standing here now, what do you think the first thing Helen Keller
would say? It would probably be the same first words you get
from Hannibal of Carthage. You know what I mean, of course.
Is this thing on? Can you hear me in the back? Did you feed my
Maybe Helen would skip the elephant.
Joking aside, what do you expect from a Deaf-Blind speaker? Are
you expecting any of the usual speech? Yeah. I will tell you
about how it was very hard growing up with disabilities. And I
had to struggle to the brink of despair.
But then one day, I decided to accept my disabilities. I
overcame them. I accomplished some great athletic feat, like
tying my shoes. Hey, that would be a great feat. These shoes
have no laces.
I also wore blue and red pajamas with a big "S" on the front,
conquered the world and lived happily ever after.
Is that the kind of speech you were expecting?
You don't know how many times I've heard that speech from
Deaf-Blind people. It seems like everyone gives that same speech
over and over again.
And the audience loves it. Every time, 15-minute standing
ovation. They say you are incredible. You should be
president and you are standing there in pajamas.
It is so redundant. Sometimes I feel like society is expecting
some kind of show. If Deaf-Blind speakers are like Phineas
Barnum's 19th century human oddities. They do a show.
Come and see the amazing Deaf-Blind man! He is faster than a
speeding driver, more powerful than duct tape, able to lease tall
buildings with a single bond. It's a class E savings bond.
But honestly, would you take a guy seriously standing here in
pajamas? With the big "S" on the front?
What is it with that speech? You get it over and over and over
again and it's always the same. There is something about that
"I accept Deaf-Blindness" routine that people want to hear.
But what does it mean? What does it mean if somebody says I
accept being Deaf-Blind? Why does that make us amazing?
We are so amazing and incredible, they tell us that. Why?
What do the words mean, "I accept?"
I don't think there is a good definition for I accept.
I acknowledge my deaf-blindness. I try to understand it and cope
with it. But that doesn't seem to be society's definition of
accept. People treat it like it means cure. The person says, "I
accept" and that means they are no longer Deaf-Blind. They live
like they are not Deaf-Blind. The disabilities are gone. We
have overcome them. So they no longer exist. No problem.
But that's not true. That's not the reality of Deaf-Blindness.
That's why I don't give that kind of a speech.
What does it really mean to accept? And who is it that needs to
I don't think many people think about that very often.
Let me tell you a little story, true story. It's become my
definition for what it means to accept.
I was at the Helen Keller Center about twenty years ago. It is a
rehab center for people who are Deaf-Blind. The world's leading
rehab center. And one of the very few that are especially
designed for the Deaf-Blind.
Anyway. This one year, they were having a seminar.
People from other states and countries were gathered there to
learn about providing Deaf-Blind services in their areas. The
center does this all the time. They asked some of the students
at the center to speak to the audience, just like I am doing now.
Educate them about Deaf-Blindness.
On this occasion, there was a young lady. I don't want to give
her name because I still see her occasionally. She was there on
stage, like I am now, speaking to an audience. She started out
by telling them how hard it was growing up with disabilities.
She went to a lot of trouble trying to deal with it.
She was ready to despair. But then she decided to accept her
disabilities. She overcame. And now she was happy and life was
And there was a 15-minute standing ovation.
I wondered why she didn't have on her blue and red pajamas, with
the big "S" on the front.
People in the audience were saying things like, "You are
amazing." "You are incredible." "You should be president."
And she was all smiles on the stage and blushing.
Okay. That's all fine and good. She can enjoy her moment on the
Well, let me finish the story. It was a few days later. I
walked into the dormitory lobby at the center. I encountered
this small group of people. There seemed to be a commotion. I
couldn't tell what was going on so I had to walk up. I found the
same Deaf-Blind woman. She was standing there in the middle of
this group of staffers. The resident staff. She was crying her
eyes out. Her mouth was open wide.
She was yelling. Tears were pouring. It was a scene that would
break your heart. And she wasn't letting anybody comfort her.
I asked one of the staff people, what's wrong? Why is she so
upset? The answer, "She is having trouble accepting her
disabilities." No joke intended. That's what they said.
A few days before that, she was all about accepting.
Then when the audience was gone, a whole different story.
That's the whole problem with that "I accept" speech.
What does it mean? I ask you that question again. What does it
mean to accept?
She just told everybody she accepted and now she can't accept.
She is frustrated trying to deal with her problems and it just
comes out in tears.
Can you accept the reality of Deaf-Blindness? There is a better
question. You see it doesn't go away when you say, I accept. It
stays with you.
You are on the stage for a few minutes. Why do you tell people
you accept it or overcome? Because that's what society wants to
hear. That's what they approve of.
If you want the audience to cheer and tell you, you are Amazing,
then you have to give them that speech. It's what they want.
Society does not want to hear about the reality of
Deaf-Blindness. Nobody does. It is too hard to deal with.
So our young Deaf-Blind woman is on stage for five minutes,
indulging in the applause, in the patronizing. Then it is over.
The reality of Deaf-Blindness comes back to her when the audience
is gone. It is like walls are removed. Reality comes crashing
back in all around you, like arctic sea water. It hits you from
every side. It hurts. It chills you all the way to your soul.
It tries to drag you under.
You don't know how hard it is to live with it. There is no "I
accept" miracle that makes it go away. It is something you deal
with constantly. If you fool yourself for a few
minutes, listening to applause, as soon as the people are gone,
it hits you again. It is like a monster.
You know, there was a new Godzilla movie this summer.
They first started doing those movies sixty years ago. They have
killed that monster a million times, but he keeps coming back.
He keeps tearing lives apart.
It's what monsters are. They can't be stopped. They can't be
cured. They keep coming back. You have to deal with them,
That's what Deaf-Blindness is. It is a monster. You have to
deal with it constantly. There is no "I accept" and it is
gone. It is still there.
Why does society demand we give that speech then? Because it does
not accept the reality of Deaf-Blindness. It creates a false
impression that through sheer positive attitude, we can just make
it go away. And we live like it doesn't exist.
No, sir. I feel that pain every day of my life. And it only
gets worse. Like most people who are Deaf-Blind, I have a
degenerative disability. It is going to get worse. It is not
going to get better. I am guaranteed that tomorrow will be
harder than today.
Do I accept that?
Most people who are Deaf-Blind have that kind of a Disability; it
gets worse, whether it is Usher's syndrome, mitochondrial
disorders, or my personal problem, which is BVVL.
Which is short for neurological nightmare. It's going to get
And that's something that distinguishes the Deaf-Blind from
Deaf-sighted or hearing-blind. We are confronted with a
situation that is going to get worse. How can we get up here and
say we have overcome and everything is good now?
I will never get that picture of that girl crying out of my mind.
It just really left an impression on me. She was kidding herself
on the stage because she wanted the approval.
But in reality, she hadn't learned to deal with it yet.
I've heard her give that same speech a couple of more times in
the last three, four years. And if you see her alone or in a
more private setting, you will still see her having emotional
Don't misunderstand me. I'm not ridiculing her, no way. I'm
exactly the same. My heart breaks. I don't cry much anymore,
but I have my own way of expressing despair. It is so hard to
deal with the monster. But let's go back to the "I accept."
You, society, yo want us to say "I accept." And you think
that's great. What about you? Do you accept Deaf-Blindness?
Don't tell me yes. That's an automatic answer.
Do you really accept it?
What does accept mean?
My basic definition: you acknowledge that the
Deaf-Blind exist. Do you ever think about us? Do you try to
I won't bother to ask you if you understand us.
Do you try to help us cope with our problem? Wait a minute. Why
should you do that? It's not your problem, right?
It is our problem. We should deal with it ourselves, you say.
You are the ones that are demanding we accept. Well, you should
accept them too. It's a two-way street.
People that created the world we live in today, the society, the
community, are people that have abilities the Deaf-Blind lack.
This community of yours was made by and for people that have
things we don't have. We need accommodations so that we can be a
part of your society. If you really accept us, you would want
that to happen. You would want us to be a part.
If you don't accept us, then you just want to patronize us and
then turn your backs.
We are amazing. We should be president. Good bye.
Put us out of your mind. Not your problem. That's not fair.
You think the government is making the community accessible for
the Deaf-Blind? They aren't. They do next to nothing. There
are services for the blind. There are services for the deaf. But
Deaf-Blindness is its own unique disability.
Those accommodations aren't always what the Deaf-Blind need.
Nobody is paying attention to what the Deaf-Blind need.
I used to have a good job with the Federal Aviation
Administration down in Washington, D.C. I was a systems
engineer. But my monster ruined it. My disabilities kept
getting worse. It wasn't just the vision and hearing. It hit my
hands really hard. I started losing feeling. I used to be
pretty good at reading sign language through touch. But then,
the sense of touch started to go. And I couldn't follow my
interpreters anymore. I can't read print fast enough to use
captions. I was going through hell trying to attend meetings.
I finally had to throw in the towel. I could not do my job
anymore. I gave up a very good paying job. I decided to move
back up here, live near family.
Then when I got divorced, and I didn't have the extra person
around with better hearing and vision, I really started to
understand my own situation better. And I didn't like it.
Don't ask me if I accept it. I will bite you.
I don't accept it. It sucks. I don't care if you cheer me on.
I'm just going to tell you the truth. It sucks.
It is very hard to deal with. And I don't like it. But I try my
best to cope. If coping counts for anything, then I do that.
But the hardest part is that the community is not built for me.
And no one is doing anything to help me cope, to be a part of the
community, to access the community.
When I came back to PA, I looked around for services.
Government was my first place to look. Okay, zero.
Then I started looking around at nonprofit groups, private
organizations. I finally found DeafCAN!. DeafCAN! was
interested in developing some Deaf-Blind services. And not just
in word, but they were definitely talking to Deaf-Blind people.
They were listening. They were trying to understand
Deaf-Blindness and what we need to make the community more
accessible for us so we can be a part of this world.
We don't want to be human oddities. They get cheered every once
in a while and then forgotten. We want to have real lives. We
want to feel like we are wanted and accepted, not like we are
something to look at. Always having to wear neon pajamas, with
the big "S" on the front.
I'm not amazing. Why do we have to be amazing? Why can't we
just be accepted?
I would give a lot just to be accepted and never be told that I
am amazing. I'm just a human being like you are.
There are other Deaf-Blind people here today. They feel the same
way. I know they do. They try hard, but they are always
struggling because they can't get the accommodations they need.
They just don't exist. And who is trying to make them happen?
Society just conveniently forgets about us. We are a Small,
obscure group. It is very easy to turn your back on us. Very
easy to ignore the Deaf-Blind.
But DeafCAN! isn't ignoring us. I have been with them
for three years now. And we had a common vision, the Deaf-Blind
people and DeafCAN! together. We had a vision of making the
community more accessible so Deaf-Blind people can have real
lives, meaningful lives. They can be independent. Have a sense
Do you know how many Deaf-Blind people are sheltered by family or
the staff at group homes or institutions? They have no lives at
all of their own. They don't make their own decisions.
Someone else does everything for them. They live like children
Oh, yes. I have seen it. I'm not exaggerating. There are
people I have been trying to get to join our DB group, but they
just -- they are not used to being in control of their lives.
They wait for somebody else to tell them what to do or do it for
them, even better. And they just sit there and wait.
They almost totally lose their identity and it scares me. I
can't bear that thought.
I don't want to lose who I am. The disability is there. But I'm
still a person in there. I like to be a part and share with
people, if it were possible. The way it is now, it is not
But DeafCAN! has a vision. One of the ways to make the community
more accessible for the Deaf-Blind is by providing us with the
senses we lack, the vision, the hearing, the ability to get
around. We do that through a Support Service Provider
The SSP for short. SSP is a person who is trained specifically
to work with the Deaf-Blind. They understand the unique
situation of the Deaf-Blind. And they lend their abilities.
They become the eyes and ears of the Deaf-Blind. More
importantly, the eyes. They can help the Deaf-Blind person
travel, to get around the community, run errands, to interact
with people. Think about a simple trip to the grocery store. You
get in your car and drive to the store. You can look around and
see what you want. You can read the labels. You can ask someone
at the desk if you need help finding something.
What if you are Deaf-Blind? There is no jumping in the car.
There is no seeing what you want. There is no talking to the
person at the desk.
Do you realize how hard things get when you are Deaf-Blind? The
simplest things become a nightmare. You've got Godzilla standing
there in the parking lot and you are going to approach him?
Maybe you are going to pass on the grocery shopping. He is
scary. And there is nothing you can do to get rid of him either.
He is always going to be standing there in your way.
But if you had some help -- not someone to do it for you. This
is an important point. Another person can go out and do your
errands for you, but then you are not in control. You are just
sitting at home waiting.
You go with an SSP, the person will be your eyes and ears and
help you do your own errands. They will help you access the
community, to see, to communicate, to get around. They give you
what your eyes can. But you are in charge. It is your life.
You don't feel like a child that way or a dog. You are calling
the shots. It makes you feel more like an adult, a real human
DeafCAN! has that vision. We have been working on it, developing
the SSP program. But who is listening to our vision?
You have to understand, DeafCAN! is a nonprofit organization. We
are not a government group. DeafCAN! gets its support from
people who donate.
How many people understand the SSP program, how important it is?
How many people make it a part of their regular donations? We
need people to become SSPs. We offer free training for that to
teach people the basics on how to interact with and assist the
Deaf-Blind. But of course, the SSPs have to be paid for their
It is like a job. So DeafCAN! has to provide funding for that.
So what can the community do? What can you do? If you are
listening to our vision, do you accept the Deaf-Blind? If you
accept the Deaf-Blind, do you want us to be a part of your
So you need to do your part to help make the community more
accessible. Maybe you might say I don't have time
to become an SSP. Okay. We don't demand you do that. Not
everybody can. But you can support DeafCAN!. We need people to
make regular contributions.
Remember, the monsters never die. They are always there. You
can't cure it. You can only cope with it. The SSP service will
not cure Deaf-Blindness. It is a continuing process of coping.
So it needs to sustain.
People need to keep it as part of their regular annual
contributions. If you make a one-time donation and then forget
about it, expecting it will be fine, then the service is going to
It is not a cure situation. It is a cope. Coping is a
continuing process. You have to keep doing it.
The monster never dies. He keeps coming back. You have to
constantly fight him. Never stop. If you run out of bullets,
you better go find some more ammo fast or he is going to stomp
I don't want DeafCAN! to run out of ammo. The service is very
important to me and I know it is important to all the DB
people here today. It is the one way we can really be a part.
Then we can have acceptance both ways. We'll accept our
Deaf-Blindness if you accept our Deaf-Blindness. That means
listening to our vision.
I hope you will. And spread the word to others. We need
awareness. We are such an obscure community. Most people
don't know anything about the Deaf-Blind or that we even exist.
We need people to think about us, not put us out of their mind.
That's listening to the vision. Then we can accept each other.
And in that lies a route to happiness.
Thank you for listening.
I could take a couple of questions, if anyone has any.
AUDIENCE MEMBER: It is not a question. It is a comment. I just
want to say that was very, very powerful. And I'm wondering if
that can be filmed and put on YouTube and help spread the word?
SCOTT STOFFEL: Well, DeafCAN! was taking a video today. We will
talk to Bill little later about that. It is fine with me.
DeafCAN pastor: I would like to respond to that. The video, we do
have it right now. We are supposed to put it on our website.
(www.deafcanpa.org) And we are hoping to get that up there.
That is a good idea to put it on YouTube. It would impact and be
seen by a lot more people. Thank you.
And I want to add. Scott, the two of us, we're late night owls.
And we just go back and forth, back and forth all hours of the
night. And we are very patient. He is very patient and very
clever. But what happens is, he always has a good answer.
And you know, of course, there are many frustrations with the
State of Pennsylvania, with their grants for SSP
services. And they just think that, you know, they can give
money to another organization that does nothing with Deaf-Blind.
And we are very frustrated. And Scott predicts that it will
happen. But we are not giving up. We are going to continue the
And we would like to thank all the people who are here who have
graciously learned to become SSPs and have rolled up their
sleeves and done the work and have donated to the program.
SCOTT STOFFEL: That would be good.
DeafCAN pastor: And I'm going to let you ask some more questions.
SCOTT STOFFEL: Be careful with will happen. We have an SSP
pilot program for DeafCAN! that's available in the southeast
corner. But we are still in the building process. We need more
support to make this grow.
It is like when you have a seed. You plant a seed in a pot in
your kitchen and then you water it and put it near the window.
But what happens if you don't water it anymore? A house plant
doesn't get a natural supply of water. It will die. You have to
keep watering it again and again and again to make it grow. If
you just water it once, it dies.
We need this to sustain. We need people to think about this and
make regular contributions to help us continue the program and
make it better.
(To a deaf-blind man) you already know what Deaf-Blindness is
Deaf-Blind man: Okay. Be positive and keep fighting and grow
like grass. SSPs. SSPs. Tell your friends. Tell other people.
One SSP becomes three SSPs and so on and so on. Before you know
it, you have nine. And then more and more. Get the word out.
We don't want to have peaks and valleys. We want to keep going
forward, stronger. We want to have a good partnership. And
that's how we will succeed.
SCOTT STOFFEL: Yes. We do need more SSPs. That's part of the
growing process. It takes resources. We have to recruit people
and train them and then people have to be willing to actually
take assignments working with the Deaf-Blind.
We have only been in operation for one year. But we have made
gradual progress. What we need now more than anything is
support, people to come and become SSPs and financial support
from people just to make donations of service.
You can donate directly to DeafCAN! online and then request an
earmark for the SSP service, specifically, if you want. There is
a box where you can write comments. You can say "SSP service"
and it will be reserved specifically for the Deaf-Blind service
DeafCAN pastor: Scott, the president of PSAD, Jeff, just told
me that he is going to start passing around a bowl for donations
today for the SSP program. He just told me that.
So thank you, Jeff, for starting that today.
SCOTT STOFFEL: Thank you to PSAD.
BETH DeafCan pastor: Anymore questions? Comments? Ideas?
SCOTT STOFFEL: That's the sort of thing that can help a lot.
That is the sort of thing that can help a lot.
AUDIENCE MEMBER: I would like to know if you are interested in
becoming -- if someone is becoming an SSP, how do you apply for
that? Or what's the process? Who do you contact?
SCOTT STOFFEL: We have regular volunteer opportunities for
people who don't have any particular training. We do social
events several times a year. And a mailing list for
Volunteer SSPs can come to any events and participate.
They can watch the veteran SSPs and learn the basic groups, how
to help the Deaf-Blind.
Signing skills are not mandatory. It is helpful if the person
can sign, because some of our DB people are signers. But we also
have people who are hard of hearing and don't know much sign or
people that use written communication.
You see me. I'm kind of an in-between. I don't have particular
communication mode that works really good, so I use a
Volunteers are always welcome to take the training. And becoming
a paid SSP is going to the next step. You can start just by
coming to a social. Give your email address or text number to
Bill or Susan before you leave today. They will pass it on to
me. I can add you to our activity announcements.
I think already stated, there will be a Christmas party December
27th in West Chester. It is a very easy event to participate in.
You don't have to do too much. People just sit and talk and eat.
----- Note: Scott Stoffel will receive a Deaf leadership award at
this Christmas party -----
DeafCAN pastor: (presenting awards) The second person happens to
b another Deaf-Blind person. She is mother of three. A wife. A
social work student at Temple University. All of which is
wonderful. But more important, she has been one of those
fireballs within our organization. She is on our Deaf-Blind
advisory committee. She has attended every stakeholders meeting
whether in Harrisburg or Philadelphia or Chester County. And she
has lived and shown and
advocated what is possible and what is needed for this
population. And it's long overdue that we give some little bit
of recognition to Marsha Drenth.
MARSHA DRENTH: Hello everyone. Thank you very much for the
recognition. Just a little bit of thoughts that sort of were
going through my head.
I am one of those Deaf-Blind monsters. I don't go away. I won't
go away. I will never go away.
You know. I was diagnosed with a hearing loss in 2007. And I
have been blind my entire life. I never knew at the time how
much my hearing loss would sort of impact me and where it would
I haven't accepted. I don't think I ever will. But as Scott was
saying, I cope. And out of that coping, I am determined. I am
dedicated, committed, and will fight for every Deaf-Blind person
in this state.
I can't say that I will do the entire United States.
But I'm committed to Pennsylvania. And that's because I am a
Deaf-Blind monster. Thank you.
DeafCAN member: Before Scott spoke, all of his Deaf-Blind
reality books sold. And that includes people from all around the
world who are Deaf-Blind. They gave him contributions and
stories that he
edited. So now, your hearts have been touched and we are out of
But I want you to know that we still have other Deaf-Blind --
well, one book, but many copies of that book. And it is a very
thin book. Costs $10. But if your heart has been touched by the
keynote speaker today, by our speaker. It is a poetry book from
all the Deaf-Blind authors in that book.
So it's the thin, dark book in the back, costs $10.
And maybe you think, you know what, Deaf people don't enjoy
reading poetry. They prefer signing poetry. You know what?
This book is different. This book, you know. it sets up a
vision. A visual language. Your Deaf language is visual, but
the Deaf-Blind language is touch and vision included in their
poetry. And it is very touching.
And you can feel and see and you will be touched by this poetry.
And I encourage you to take a look at it see if you like it. I'm
sure you will. And maybe you will buy it
(end of edited transcript)
Books by Scott Stoffel;:
Dark, Dark Silence
Poems of the Forbidden
By Various Authors
Edited by S. M. Stoffel
Copyright © 2011 S. M. Stoffel All rights reserved.
Stoffel Publishing House
This book is available in several formats:
Regular print edition:
Large print edition:
For Braille or electronic editions,
contact me at:
Also Available at this site: Hector's Magic (fantasy with
Reader's Challenge), Morpha Trilogy (sci-fi), Stoffel's Guide
(humor) and more.
Announcing the Release of a New Book
Deaf-Blind Reality: Living the Life
by Scott M Stoffel
(also available on Amazon)
Most stories about disabled people are written for the sake of
being inspirational. These stories tend to focus on some
achievement, such as sports or academics, but rarely do they give
a true and complete view of the challenges individuals must deal
with on a daily basis. For example: How does a deaf-blind person
interact with hearing-sighted people at a family reunion? How
does she shop for groceries? What goes through his mind when he
enters a classroom full of non-handicapped peers? These aren't
questions you are likely to find answers to while reading that
incredible tale of success. They are, however, issues that a
deaf-blind person wishes others understood.
Deaf-Blind Reality: Living the Life explores what life is really
like for persons with a combination of vision and hearing loss,
and in a few cases, other disabilities as well. Editor Scott M.
Stoffel presents extensive interviews with 12 deaf-blind
individuals, including himself, who live around the world, from
Missouri to New Zealand, Louisiana to South Africa, and Ohio to
England. These contributors each describe their families'
reactions and the support they received; their experiences in
school and entering adulthood; and how they coped with
degeneration, ineffective treatments, and rehabilitation. Each
discusses their personal education related to careers,
relationships, and communication, including those with cochlear
implants. Deaf-Blind Reality offers genuine understanding of the
unspectacular but altogether daunting challenges of daily life
for deaf-blind people.
Scott M. Stoffel is a retired systems engineer and freelance
writer living in Lansdale, PA.
ISBN 978-1-56368-535-4, 1-56368-535-3, 6 x 9 paperback, 304 pages
ISBN 978-1-56368-536-1, 1-56368-536-1
contact me at firstname.lastname@example.org.