normally when I don’t listen to my wife
bad things happen that’s my talk thanks
for coming out today know when I found
out that I’d be speaking here at TEDx I
shared an idea with her and she said
absolutely not you cannot start off your
TED talk with a tumblr quote but here it
goes there was a thread of people
talking about the increased number of
people being diagnosed with autism over
the years and within this thread a
person with autism shared the following
thought they said disability exists
within the context of the environment
disability exists within the context of
the environment and they went on to say
that the environment isn’t making people
autistic in the sense of some chemical
causing brain damage but rather we’ve
created a modern environment which is
hostile to autistic people effective
effectively making them even more
disabled disability exists in the
context of the environment I like to
hold that quote alongside another one
and that is if you don’t like the game
change the rules an example of this that
affects all of us
was the tax code changes that took place
last year right the people in power
decided that they didn’t like the way
that the game was played so they changed
the rules and when you hold these quotes
side-by-side disability exists in the
context of the environment and if you
don’t like the game change the rules a
new idea begins to emerge if you change
the environment the disability fades
into the background so how’s this play
out in real life
two examples the first take a wheelchair
this incredible piece of equipment helps
millions of people to be able to get
around but if if you lived in a home
that has a number of steps to get in and
out of it you’re stuck
you can’t get out of your own home so
what do you do build a ramp right you’ve
changed the environment the disability
is still there but it’s no longer the
focal point and a person has the ability
to be re-engaged with their community
second who here wears corrective eyewear
right sixty percent of the developed
world uses glasses contacts or his head
laser eye surgery without these glasses
I’m legally blind and in the history of
the world it wasn’t too long ago that
without this piece of technology my
ability to contribute to society would
have been greatly diminished disability
exists in the context of the environment
and if you change the environment the
disability fades into the background so
by wearing these pieces of plastic and
metal I’ve changed my environment you
have changed your environment and your
disability fades into the background for
the last decade I’ve been obsessed with
how people live together in different
ways first as a resident assistant in
college then it’s part of a home for
troubled teens and for the vast majority
of my professional career I’ve worked
alongside people with developmental
disabilities and their families and when
I tell people that I’m in this line of
work they frequently say oh I could
never do that that’s incredibly
difficult work and sure just like any
job has its tough times my life has
gotten significantly better because the
people that I’ve gotten to know I’d like
you to close your eyes just for a
minutes close your eyes and imagine the
following situation you’re 82 years old
your wife is receiving hospice care and
it’s not going well you have a 57 year
old daughter she lives in a group home
she can barely speak she needs 24-hour
care you have a 48 year old son he too
lives in a group home he can’t speak he
has seizures he needs help in the
bathroom you believe that he’s been
actively abused by his housemates what
can you put words to the fear that lives
in the pit of your stomach can you
express the sense of powerlessness that
exists when you questioned the ability
and motives of the people entrusted to
care for your children as you open your
eyes I can tell you that of all the
parents that I worked with of all the
different backgrounds they had one
unifying question what’s going to happen
to my child when I can no longer take
care of them or when I pass away in 2014
82 year-old Frank stack of Elmhurst
Illinois couldn’t take it any longer on
a Saturday morning Frank went and picked
up his son and daughter from their
respective group homes and brought them
back to the family house at 6:33 Frank
called the manager of his son’s group
home and said I need you to do a favor
for me I need you to call my daughter
Gloria she lives in Wisconsin here’s her
number I need you to tell her that there
are four bodies in Elma her stead I’ve
shot Joan Frankie and Mary and I’m about
to shoot myself and as the manager
pleaded with him Frank said I got to do
what I got to do before hanging up the
without question what Frank Stack did
was horrific however it is unacceptable
that any person should have to live with
the fear that tormented Frank as a REIT
as a society we must wrestle with the
consequences and reality that there are
people in this room that hope that their
child dies before they do so that they
know where their loved one is that it
makes me angry that there are millions
of people that live with this reality
day in and day out we have to do better
we must do better a number of years ago
I ran across a quote that would change
my life forever often when we’re talking
about what we’re going to give our lives
to we asked the question of ourselves
and those around us what do you love
what is it that when you do it you feel
alive you think man I could do this
forever
I was made for this so when we’re
talking about calling and mission and
vocation and purpose what we’re going to
give our life to one of the questions we
often ask is what do you love but
there’s another question we can ask what
makes you angry
what is it that when you see it you
think that’s wrong somebody should do
something about that what is it that
when you see it it stirs something
within you that someone should devote
themselves to that somebody should make
a difference there somebody should help
them maybe that somebody’s you we need
to listen to our anger because God may
be using it to get our attention now
anger is a lot like fire and when
there’s a fire burning in our bellies we
have three different courses of action
that we can
take the first we view anger most
commonly as explosive you throw gasoline
on the fire and it turns into a fit of
rage and this frequently results in
violence and while this flash of anger
can bring attention to what is going on
it frequently has the exact opposite
effect as the desired outcome this out
Birk outbursts looks impressive but
there frequently is little substance
behind it it’s hard to sustain and
people get burnt in the process or what
happens when you don’t feed a fire it
dies when a person doesn’t engage with
their anger they become complacent
you’ve seen this major societal
structural systemic issues get boiled
down to that’s just how things are know
this may be how things are now but it’s
not right it doesn’t have to be this way
anger should not be ignored
and finally anger can be controlled this
fire burning in our bellies this energy
we can harness it and have channeled in
the right directions anger can change
everything in Indiana like many states
when a person with a developmental
disability graduates from high school
frequently at age 22
support services for that person fall
off a cliff until parents turn 80 years
old or pass away let me repeat that for
emphasis and clarity for a family with a
loved one with autism Down syndrome a
traumatic brain injury or any number of
different developmental disabilities
until the parents turn 80 years old or
pass away there are few to know good
long-term housing and support solutions
for that person and for those people
that are diagnosed or as seen as higher
functioning those people have even fewer
options than that for the 18 months that
I was a program manager my life centered
around 45 families who had little hope
in the only system that was offered to
them they would come to me and say what
options do we have
they didn’t have an answer if you don’t
like the game change the rules something
new needed to be created something new
that could address the needs of the
parents and other family members
something new that could have recognized
the uniqueness of each individual person
living in the homes something new that
would not only allow caregivers to
continue doing the work that they loved
but to make a career path out of it a
new system needed to be created that
recognized that disability exists within
the context of the environment and if
you change the environment the
disability fades in the background in
2015 I left my job to start a privately
funded nonprofit organization called
Cass housing Cass stands for
customizable affordable sustainable and
safe and our sole pursuit is to create
family driven housing options for people
with developmental disabilities now
starting Cass has been the most
difficult thing that I have ever done in
my life it has been hard to create to
craft this program that could adapt on a
person-by-person and a house-by-house
basis we have run into countless
roadblocks at a city zoning ordinance
and State Building Building Code
I’d be lying if I told you that there
weren’t a number of times that I wanted
to quit and then I think of Frank and
Joan and Mary and Frankie
I think the 131 families on our waiting
list and the thousands of others in our
community that face the same fear Frank
felt and I get angry and I get back to
work
in this moment what is it that makes you
angry what’s the fire burning in your
belly don’t let it get out of control
but don’t ignore it don’t get complacent
lean into it
and don’t stop do something with it for
me this journey has taught me to see
disability as diversity rather than
deficit I’d like you to meet a friend of
mine named David David has Down syndrome
and David gives fantastic hugs and when
I get a hug from David I know that I am
the most beloved
person in the world in that moment how
can I love another like David loves two
and a half years ago this picture was
taken with one of our daughters and Josh
and Josh has autism and ever since this
picture was taken every single time that
I see Josh he asked me how my wife and
three kids are doing because he deeply
cares for them aren’t these raw
expressions of truth and love what we’re
all looking for out of life see if we
continually judge people by what they
cannot do we will be forever defined by
our deficits but everyone every
person they bring something to the table
Einstein said everybody’s a genius but
if you judge a fish by its ability to
climb a tree it will spend its entire
life thinking that it’s stupid
the question isn’t does a person have a
disability
we all have disabilities the question is
do we have control over our environment
now one of the most used signature lines
and corporate American email is be the
change you wish to see in the world it’s
a very inspiring quote and this may be a
tad presumptuous of me but I’d like to
add on the Gandhi’s work be the change
you wish to see in the world because no
whatever it is that makes you angry
start digging find out what all the
rules are find out why the rules are the
way that they are and if you don’t like
the way that the game is played find a
way to change the rules find a way to
change the environment thank you [Applause]
bad things happen that’s my talk thanks
for coming out today know when I found
out that I’d be speaking here at TEDx I
shared an idea with her and she said
absolutely not you cannot start off your
TED talk with a tumblr quote but here it
goes there was a thread of people
talking about the increased number of
people being diagnosed with autism over
the years and within this thread a
person with autism shared the following
thought they said disability exists
within the context of the environment
disability exists within the context of
the environment and they went on to say
that the environment isn’t making people
autistic in the sense of some chemical
causing brain damage but rather we’ve
created a modern environment which is
hostile to autistic people effective
effectively making them even more
disabled disability exists in the
context of the environment I like to
hold that quote alongside another one
and that is if you don’t like the game
change the rules an example of this that
affects all of us
was the tax code changes that took place
last year right the people in power
decided that they didn’t like the way
that the game was played so they changed
the rules and when you hold these quotes
side-by-side disability exists in the
context of the environment and if you
don’t like the game change the rules a
new idea begins to emerge if you change
the environment the disability fades
into the background so how’s this play
out in real life
two examples the first take a wheelchair
this incredible piece of equipment helps
millions of people to be able to get
around but if if you lived in a home
that has a number of steps to get in and
out of it you’re stuck
you can’t get out of your own home so
what do you do build a ramp right you’ve
changed the environment the disability
is still there but it’s no longer the
focal point and a person has the ability
to be re-engaged with their community
second who here wears corrective eyewear
right sixty percent of the developed
world uses glasses contacts or his head
laser eye surgery without these glasses
I’m legally blind and in the history of
the world it wasn’t too long ago that
without this piece of technology my
ability to contribute to society would
have been greatly diminished disability
exists in the context of the environment
and if you change the environment the
disability fades into the background so
by wearing these pieces of plastic and
metal I’ve changed my environment you
have changed your environment and your
disability fades into the background for
the last decade I’ve been obsessed with
how people live together in different
ways first as a resident assistant in
college then it’s part of a home for
troubled teens and for the vast majority
of my professional career I’ve worked
alongside people with developmental
disabilities and their families and when
I tell people that I’m in this line of
work they frequently say oh I could
never do that that’s incredibly
difficult work and sure just like any
job has its tough times my life has
gotten significantly better because the
people that I’ve gotten to know I’d like
you to close your eyes just for a
minutes close your eyes and imagine the
following situation you’re 82 years old
your wife is receiving hospice care and
it’s not going well you have a 57 year
old daughter she lives in a group home
she can barely speak she needs 24-hour
care you have a 48 year old son he too
lives in a group home he can’t speak he
has seizures he needs help in the
bathroom you believe that he’s been
actively abused by his housemates what
can you put words to the fear that lives
in the pit of your stomach can you
express the sense of powerlessness that
exists when you questioned the ability
and motives of the people entrusted to
care for your children as you open your
eyes I can tell you that of all the
parents that I worked with of all the
different backgrounds they had one
unifying question what’s going to happen
to my child when I can no longer take
care of them or when I pass away in 2014
82 year-old Frank stack of Elmhurst
Illinois couldn’t take it any longer on
a Saturday morning Frank went and picked
up his son and daughter from their
respective group homes and brought them
back to the family house at 6:33 Frank
called the manager of his son’s group
home and said I need you to do a favor
for me I need you to call my daughter
Gloria she lives in Wisconsin here’s her
number I need you to tell her that there
are four bodies in Elma her stead I’ve
shot Joan Frankie and Mary and I’m about
to shoot myself and as the manager
pleaded with him Frank said I got to do
what I got to do before hanging up the
without question what Frank Stack did
was horrific however it is unacceptable
that any person should have to live with
the fear that tormented Frank as a REIT
as a society we must wrestle with the
consequences and reality that there are
people in this room that hope that their
child dies before they do so that they
know where their loved one is that it
makes me angry that there are millions
of people that live with this reality
day in and day out we have to do better
we must do better a number of years ago
I ran across a quote that would change
my life forever often when we’re talking
about what we’re going to give our lives
to we asked the question of ourselves
and those around us what do you love
what is it that when you do it you feel
alive you think man I could do this
forever
I was made for this so when we’re
talking about calling and mission and
vocation and purpose what we’re going to
give our life to one of the questions we
often ask is what do you love but
there’s another question we can ask what
makes you angry
what is it that when you see it you
think that’s wrong somebody should do
something about that what is it that
when you see it it stirs something
within you that someone should devote
themselves to that somebody should make
a difference there somebody should help
them maybe that somebody’s you we need
to listen to our anger because God may
be using it to get our attention now
anger is a lot like fire and when
there’s a fire burning in our bellies we
have three different courses of action
that we can
take the first we view anger most
commonly as explosive you throw gasoline
on the fire and it turns into a fit of
rage and this frequently results in
violence and while this flash of anger
can bring attention to what is going on
it frequently has the exact opposite
effect as the desired outcome this out
Birk outbursts looks impressive but
there frequently is little substance
behind it it’s hard to sustain and
people get burnt in the process or what
happens when you don’t feed a fire it
dies when a person doesn’t engage with
their anger they become complacent
you’ve seen this major societal
structural systemic issues get boiled
down to that’s just how things are know
this may be how things are now but it’s
not right it doesn’t have to be this way
anger should not be ignored
and finally anger can be controlled this
fire burning in our bellies this energy
we can harness it and have channeled in
the right directions anger can change
everything in Indiana like many states
when a person with a developmental
disability graduates from high school
frequently at age 22
support services for that person fall
off a cliff until parents turn 80 years
old or pass away let me repeat that for
emphasis and clarity for a family with a
loved one with autism Down syndrome a
traumatic brain injury or any number of
different developmental disabilities
until the parents turn 80 years old or
pass away there are few to know good
long-term housing and support solutions
for that person and for those people
that are diagnosed or as seen as higher
functioning those people have even fewer
options than that for the 18 months that
I was a program manager my life centered
around 45 families who had little hope
in the only system that was offered to
them they would come to me and say what
options do we have
they didn’t have an answer if you don’t
like the game change the rules something
new needed to be created something new
that could address the needs of the
parents and other family members
something new that could have recognized
the uniqueness of each individual person
living in the homes something new that
would not only allow caregivers to
continue doing the work that they loved
but to make a career path out of it a
new system needed to be created that
recognized that disability exists within
the context of the environment and if
you change the environment the
disability fades in the background in
2015 I left my job to start a privately
funded nonprofit organization called
Cass housing Cass stands for
customizable affordable sustainable and
safe and our sole pursuit is to create
family driven housing options for people
with developmental disabilities now
starting Cass has been the most
difficult thing that I have ever done in
my life it has been hard to create to
craft this program that could adapt on a
person-by-person and a house-by-house
basis we have run into countless
roadblocks at a city zoning ordinance
and State Building Building Code
I’d be lying if I told you that there
weren’t a number of times that I wanted
to quit and then I think of Frank and
Joan and Mary and Frankie
I think the 131 families on our waiting
list and the thousands of others in our
community that face the same fear Frank
felt and I get angry and I get back to
work
in this moment what is it that makes you
angry what’s the fire burning in your
belly don’t let it get out of control
but don’t ignore it don’t get complacent
lean into it
and don’t stop do something with it for
me this journey has taught me to see
disability as diversity rather than
deficit I’d like you to meet a friend of
mine named David David has Down syndrome
and David gives fantastic hugs and when
I get a hug from David I know that I am
the most beloved
person in the world in that moment how
can I love another like David loves two
and a half years ago this picture was
taken with one of our daughters and Josh
and Josh has autism and ever since this
picture was taken every single time that
I see Josh he asked me how my wife and
three kids are doing because he deeply
cares for them aren’t these raw
expressions of truth and love what we’re
all looking for out of life see if we
continually judge people by what they
cannot do we will be forever defined by
our deficits but everyone every
person they bring something to the table
Einstein said everybody’s a genius but
if you judge a fish by its ability to
climb a tree it will spend its entire
life thinking that it’s stupid
the question isn’t does a person have a
disability
we all have disabilities the question is
do we have control over our environment
now one of the most used signature lines
and corporate American email is be the
change you wish to see in the world it’s
a very inspiring quote and this may be a
tad presumptuous of me but I’d like to
add on the Gandhi’s work be the change
you wish to see in the world because no
whatever it is that makes you angry
start digging find out what all the
rules are find out why the rules are the
way that they are and if you don’t like
the way that the game is played find a
way to change the rules find a way to
change the environment thank you [Applause]
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