am writing this message and sending it everywhere in order to reach as
many people as possible who have been labeled disabled. There is an
important day happening at the TASH conference in Anaheim on Saturday,
November 17. The meeting that day is called Leading With a Quiet
Voice. This will be a day for us to think and explore together what it
means for us -- as people who are called disabled -- to be leaders in
our own lives, in our communities and as advocates.
It is very important for as many people who are labeled disabled as
possible to come on Saturday, November 17, from 10 AM - 4 PM. It is
important because we have many things to share with each other and we
have many questions to explore. Of course it is also important for
people who have not been labeled disabled to come. But I am sure that
lots of people who are labeled normal will come. Unfortunately, such
people often go to important meetings without us. This time we must be
there too because the purpose of the meeting is for us to find our own
questions and answers.
My name is Judith Snow. I am a person who can barely use my body at
all. Every day I live and work through the assistance of several
I am 52 years old. All my life I have been around people who donít
speak. I have often felt that I am a lot like people who donít
speak, except that I do speak. My body is similar. I do things with
the support of other people -- like most people who donít speak. I
have been interested all my life in the way that people who donít
speak live and communicate: I notice how so many other people treat
people who donít speak as if they arenít really people.
Last year Rob Cutler asked me a question. Rob has autism and he mainly
talks by using facilitated communication with Mark, his supporter. Rob
is also the President of the Autism National Committee. He asked me:
ďHow can we close BRI?Ē [Sentence deleted for legal reasons.]
Robís question raised many difficult questions for me. I have not
stopped thinking about Robís question.
The real problem -- the really important question I think -- is:
ďHow can people listen to us?Ē
Advocates invent many strategies. Every strategy is meant to get
someone more powerful to listen, agree and change how they act. People
get together in groups. They raise money and hire people to make
important points with politicians. They research facts and write
papers. They block buses and roads. They create meetings and interrupt
other meetings. They make phone calls and sometimes make enough phone
calls to block the phone system. They hand out pamphlets explaining
their ideas and experience. They make web sites and connect with other
peopleís web sites. They light candles and hold hands. They sing and
When people want people who are labeled disabled to be leaders they
try to get us to do all these things. Rob was asking me how people
with autism could do these things and succeed in closing hateful
places where people are being tortured.
Not one of these strategies to make change was invented by someone who
doesnít speak. All those strategies are difficult, and usually
impossible, for a person who doesnít speak. They are also difficult,
and usually impossible, for someone like myself who goes through life
with the hands-on support of other people.
- It is difficult for us just to get together. You have to meet with
people regularly and often enough to carry out sustained action. Often
we donít have the transportation, attendants, energy, etc.
- We are usually dirt poor.
- We are often living in places where our activities are controlled.
- Writing and speaking often are not our best way of communicating.
- Nearly all of us have been physically and emotionally abused, even tortured.
Many of us live lives where we are hurt every day.
- We are taught to not trust and not love ourselves.
- People who love us and support us want us to be safe and donít
want us to challenge powerful people who can hurt us.
- People think that it is too bad we are the way we are. They donít
listen to us because they think the ďnormalĒ ways of living
Sometimes people who are called disabled break through and, like ADAPT
or SABE, are successful at making change. But even these successes are
limited when it comes to people who donít speak. Other advocates
often donít include people who are not articulate.
For me there are other questions that are rarely asked and they are
very, very important questions. I ask these questions because I think
I am a leader and Rob Cutler is a leader, and many of us are and can
be leaders. I think we need to find our OWN ways to lead so that we
will be respected and successful. We need to find our OWN ways to get
people to listen.
My questions are.
Why are we called ďdis-abledĒ?
We have different and unique characteristics. Often we are silent, or
nearly so. Our bodies are unusually shaped. We are often fragile and
We live in intimate connection with other peopleís bodies, minds and
hearts. Our ways are not inferior to othersí ways.
Living in this way challenges and extends our courage, our love, our
empathy for others and our creativity. We see and hear what others
I am not suggesting that everyone should be like us. Our gifts are
rare, and that is good. But, as difficult as our bodies and minds can
be, their very uniqueness brings strength and positive challenge both
to we who live in these bodies and minds, and to society -- when we
are appreciated, respected and celebrated.
We are unique and unusual people.
Why are we constantly being compared to the ďnormalĒ? What is
important about us that is being denied? What are we and others
turning away from?
Where do our gifts find full expression? How do our gifts benefit
others? How can this aspect of our lives be celebrated and shared
How do we naturally lead -- as our vulnerable selves and not as bad
copies of other people?
Who listens to us now? How can it be made possible that more people
Leading With a Quiet Voice will be a day for us to explore these
questions. We will explore my questions and your questions. We will
share our lives.
We will not spend all day listening to people who talk. We will spend
a lot of time in silence. We can move around. We can write comments or
draw on the papered walls.
By the end of the day we will have made some personal decisions and
some group decisions. We will take these ideas and decisions home. We
will strengthen our leadership everywhere.