my brother was 29 years old when he
suddenly lost the vision in one eye it
took six months emergency room visits
and multiple doctors to figure out that
he had multiple sclerosis and it’s hard
to say we’re gonna call it a mouse now
about a year and a half later I rolled
over in bed one morning and everything I
knew about my life changed I couldn’t
see lift my head or get out of bed by
myself there’s nothing scarier than just
completely not knowing what to do where
to turn how to react even at that
particular moment people who have
diseases that come on suddenly or
conditions that come on suddenly are
very often ill prepared to deal with it
what I find about many of the people
that we work with at the neuro balance
Center is that they were diagnosed when
they were young adults and they at the
time like all other people in their 20s
let’s say think they’re invincible that
kind of stuff doesn’t happen you’re
puffed up with the idea that you can
accomplish anything that the world is at
your feet and that if you work hard
enough and try hard enough you can
achieve anything you want we’re
finishing school building careers and
raising families and one day everything
changes
I read a book recently by Sheryl
Sandberg called option B she suffered an
intense sudden loss in her life you have
no idea what to do next
and that’s when you learn that
resilience according to Cheryl is a
muscle that you have to build when we’re
young people we haven’t had a chance to
build that resilience muscle so we’re
completely unprepared in a way that we
might not be if we had been a little bit
older and all of our peers weren’t
happy-go-lucky and running out there
going after their dreams and I think the
most important thing I experienced then
was a complete isolation
I had nothing to compare it to
I had nothing around me that looked like
what happened to me and I could imitate
to try to move on or move up or move
over what I live with now is the fact
that I will never know if tomorrow is
the next time that’s gonna happen to me
I recovered after about six months I got
back about 80% of what I had lost that
day and I’m one of the really really
lucky ones I have an amazing family who
jumped into action and helped me with
everything from driving my children
where they needed to go
fixing my food being there all my kids
woke up in the morning and pretending
it’s just cuz you know because I wasn’t
ready to tell my children I was very
lucky but I also experienced the
response of people in my neighborhood
and my community
and my workplace and that wasn’t jumping
and help that was how long till you’re
back at work and well I don’t want to
disturb her so I’m not gonna ring the
bell or call her and I don’t want her to
feel badly like she can’t come with and
we’re doing this so I don’t invite her
isolation is our biggest enemy and it’s
the thing that I’m hoping I can get you
to change because I think we as a
community can do better having said that
I think that we the disabled population
that I joined in 2001 can also do better
so first we’re gonna change a really
ensconced tradition that we all have our
parents taught us that when someone
appears different you don’t stare and so
we avert our eyes when somebody looks
different we don’t want to stare we want
to be polite we don’t want to embarrass
them we don’t want to make them feel
different so we don’t look because of
that the disabled person also doesn’t
look doesn’t make eye contact with you
they don’t want to stick out in a crowd
they don’t want to be the elephant in
the room and they were taught by their
parents don’t stare don’t look so we are
helping the people around us not feel
embarrassed by not establishing eye
contact with them and there goes the
circle
no eye contact no eye contact no eye
contact so we’re not learning about the
disabled people in our community and
they’re not learning that it’s okay that
they look different and that they can
ask for help
if you use census data about 20% of the
population is disabled I’m curious when
you look around the room how many people
you see in this room that you think are
disabled that’s 20 people in this room
for most of us including me today right
now
aside from effect and I’m sitting in a
chair when no one else is when they do
these talks
you wouldn’t know I was disabled it’s
great most of the time that I’m not
wearing a neon sign
but in addition nobody cuts me any slack
in addition nobody knows what to say so
they don’t ask me about my story and I’m
left out so in 2001 I was diagnosed in
2003 I approached the yoga studio owner
in Barrington and I asked if she’d be
willing to let me offer an adaptive
fitness class for people with MS and she
said sure so my dad made up the name fit
I’m asked my aunt drew us a logo I made
a little poster and I posted it on the
bulletin board in a little yoga studio
up 25 stairs with one handicapped space
on the street and no parking lot nearby
I put up the sign naively not realizing
that I picked the wrong place and five
people showed up the first day and none
of those five people were members at
those yoga’s at that yoga studio but
five people came that means that you all
know someone who’s disabled they may not
be here today you may not have seen them
in a while but everybody knows somebody
who could benefit from being asked to
tell their story who could benefit from
you establishing eye contact knocking on
the door and making that phone call
you have to face that uncomfortable
moment because everybody wins in the end
everybody wins every night I wonder what
tomorrow brings and the next day I get
to go up and do the best job in the
whole I picked my job
I picked who I wanted to work with
I picked who I wanted to work for and I
dragged them all along with me while I
had my dukes up and we’re looking at was
looking under every rock to find some
way that I could live better after I
left the doctor’s office and I’m taking
my medicine now what what do we do next
you don’t see the disabled people
because they are not there about town
they’re not eating in our local
restaurants they’re not shopping in our
local stores part of that we can change
but part of it is that we have these
gorgeous old buildings in Barrington and
there are two cement steps to get in the
front door or the bathrooms are in the
basement or there’s one handicapped
space in front or there’s no parking lot
for blacks our energy is precious when
we’re disabled we might work twice as
twice as hard to do that same thing that
you take for granted so when it’s apps
too much of our precious energy to go to
a place that’s not very convenient we
don’t go and we say no when you invite
us we don’t really want to explain why
we’re saying no we don’t want you to
feel bad and one and pick a different
restaurant or a different venue so we
stay quiet so this is our fault too this
is everybody’s fault so I run a
non-profit we serve about 750 people
it started as that fit I masks class and
then we moved seven times
14 years and every time we move we try
to do better we we didn’t have enough
parking there so then we moved to a
place that had a parking lot yeah but
not a great parking lot but I don’t
learn without stumbling we all learn by
stumbling along and each time trying to
pick a new location that would work for
us so our last move we went and looked
at every place we could possibly rent we
wanted to double our space we need more
space and we looked high and low and it
was not an easy look but we found a
place that we thought first of all had a
big enough parking lot right outside the
door they were gonna let us put
automatic openers on they were gonna
widen the door to the bathroom the
vacancy was on the first floor our life
was good and we could afford the rent
and so we were all we could went to an
architect
we got everything planned out we’re
about to sign the contract and the phone
rings and they say the tenants in the
building are not comfortable with having
you in the building the commotion
doesn’t fit with what we do
so the commotion by the way is the
wheelchairs walkers and canes the
commotion is that it may take us a
little longer to get from our car to the
neuro balance space in the building the
commotion is that they’d have to remodel
a bathroom the commotion is that the
choice parking space is right in front
of the door we’re gonna be changed to
handicapped spaces so there were fewer
of them then and their favorite place to
park was was gonna be gone interestingly
I think sometimes discrimination because
that’s what we’re talking about here
sometimes it’s deliberate but more often
it’s inadvertent it’s because we don’t
realize
that what we’re saying hurts or we don’t
realize that discrimination needs to
include people who are disabled and it’s
not just about the color you are or the
sex that you are it’s how how abled you
are and some people would say that we’re
all only temporarily abled we’re born
completely dependent and most of us
leave this world completely dependent as
well but in the middle we don’t realize
that everybody around us has a different
level of ability
we’re differently abled every single one
of us so the 700 people who come to the
centre come because it’s safe place they
come because they want to be able to do
something about their condition and you
can’t control that you have MS or
Parkinson’s or stroke or neuropathy or
ALS but you can control what you do
about it how you react to it how you
react to others how you can educate
others to react to you and to treat you
and so we come to this place where
there’s transportation with a lift that
can get you there where there’s every
space in the first row as a handicapped
space six handicapped bathrooms lowered
counters everything we could possibly
think of no thresholds between different
types of flooring and we come there
because we don’t want to be the elephant
in the room and there you’re in a room
of elephants everybody’s the same
everybody’s the same amount challenged
everybody’s got something they can’t do
and they’re accepted there and so it’s a
place that we belong and it’s a place
for us to build our resilience muscle
because an option B they also talked
about Collette
resilience collective roomy resilience
is about surrounding yourself with other
people who have been through the stage
that you’re going through and are
willing to hang on to you while you feel
you can’t do it and help you learn how
to do it how to be resilient how to keep
going how to push the limits how to find
other people like you I can’t even begin
to tell you what the smiles look like as
they came through the door the first
time and realized that they found a home
everyone wants to volunteer everyone
wants to work the front desk everyone
wants to tell other people people were
warm walking from the other buildings
just to see what it is we’re doing in
there I encourage you not to avert your
eyes not to avoid staring but instead
ask a question ask for us to tell our
stories ask for us to help you when you
plan things when you plan renovations
when you pick a venue to have a party
make sure everybody can come to the
table because we all want to thanks for
having me
you
suddenly lost the vision in one eye it
took six months emergency room visits
and multiple doctors to figure out that
he had multiple sclerosis and it’s hard
to say we’re gonna call it a mouse now
about a year and a half later I rolled
over in bed one morning and everything I
knew about my life changed I couldn’t
see lift my head or get out of bed by
myself there’s nothing scarier than just
completely not knowing what to do where
to turn how to react even at that
particular moment people who have
diseases that come on suddenly or
conditions that come on suddenly are
very often ill prepared to deal with it
what I find about many of the people
that we work with at the neuro balance
Center is that they were diagnosed when
they were young adults and they at the
time like all other people in their 20s
let’s say think they’re invincible that
kind of stuff doesn’t happen you’re
puffed up with the idea that you can
accomplish anything that the world is at
your feet and that if you work hard
enough and try hard enough you can
achieve anything you want we’re
finishing school building careers and
raising families and one day everything
changes
I read a book recently by Sheryl
Sandberg called option B she suffered an
intense sudden loss in her life you have
no idea what to do next
and that’s when you learn that
resilience according to Cheryl is a
muscle that you have to build when we’re
young people we haven’t had a chance to
build that resilience muscle so we’re
completely unprepared in a way that we
might not be if we had been a little bit
older and all of our peers weren’t
happy-go-lucky and running out there
going after their dreams and I think the
most important thing I experienced then
was a complete isolation
I had nothing to compare it to
I had nothing around me that looked like
what happened to me and I could imitate
to try to move on or move up or move
over what I live with now is the fact
that I will never know if tomorrow is
the next time that’s gonna happen to me
I recovered after about six months I got
back about 80% of what I had lost that
day and I’m one of the really really
lucky ones I have an amazing family who
jumped into action and helped me with
everything from driving my children
where they needed to go
fixing my food being there all my kids
woke up in the morning and pretending
it’s just cuz you know because I wasn’t
ready to tell my children I was very
lucky but I also experienced the
response of people in my neighborhood
and my community
and my workplace and that wasn’t jumping
and help that was how long till you’re
back at work and well I don’t want to
disturb her so I’m not gonna ring the
bell or call her and I don’t want her to
feel badly like she can’t come with and
we’re doing this so I don’t invite her
isolation is our biggest enemy and it’s
the thing that I’m hoping I can get you
to change because I think we as a
community can do better having said that
I think that we the disabled population
that I joined in 2001 can also do better
so first we’re gonna change a really
ensconced tradition that we all have our
parents taught us that when someone
appears different you don’t stare and so
we avert our eyes when somebody looks
different we don’t want to stare we want
to be polite we don’t want to embarrass
them we don’t want to make them feel
different so we don’t look because of
that the disabled person also doesn’t
look doesn’t make eye contact with you
they don’t want to stick out in a crowd
they don’t want to be the elephant in
the room and they were taught by their
parents don’t stare don’t look so we are
helping the people around us not feel
embarrassed by not establishing eye
contact with them and there goes the
circle
no eye contact no eye contact no eye
contact so we’re not learning about the
disabled people in our community and
they’re not learning that it’s okay that
they look different and that they can
ask for help
if you use census data about 20% of the
population is disabled I’m curious when
you look around the room how many people
you see in this room that you think are
disabled that’s 20 people in this room
for most of us including me today right
now
aside from effect and I’m sitting in a
chair when no one else is when they do
these talks
you wouldn’t know I was disabled it’s
great most of the time that I’m not
wearing a neon sign
but in addition nobody cuts me any slack
in addition nobody knows what to say so
they don’t ask me about my story and I’m
left out so in 2001 I was diagnosed in
2003 I approached the yoga studio owner
in Barrington and I asked if she’d be
willing to let me offer an adaptive
fitness class for people with MS and she
said sure so my dad made up the name fit
I’m asked my aunt drew us a logo I made
a little poster and I posted it on the
bulletin board in a little yoga studio
up 25 stairs with one handicapped space
on the street and no parking lot nearby
I put up the sign naively not realizing
that I picked the wrong place and five
people showed up the first day and none
of those five people were members at
those yoga’s at that yoga studio but
five people came that means that you all
know someone who’s disabled they may not
be here today you may not have seen them
in a while but everybody knows somebody
who could benefit from being asked to
tell their story who could benefit from
you establishing eye contact knocking on
the door and making that phone call
you have to face that uncomfortable
moment because everybody wins in the end
everybody wins every night I wonder what
tomorrow brings and the next day I get
to go up and do the best job in the
whole I picked my job
I picked who I wanted to work with
I picked who I wanted to work for and I
dragged them all along with me while I
had my dukes up and we’re looking at was
looking under every rock to find some
way that I could live better after I
left the doctor’s office and I’m taking
my medicine now what what do we do next
you don’t see the disabled people
because they are not there about town
they’re not eating in our local
restaurants they’re not shopping in our
local stores part of that we can change
but part of it is that we have these
gorgeous old buildings in Barrington and
there are two cement steps to get in the
front door or the bathrooms are in the
basement or there’s one handicapped
space in front or there’s no parking lot
for blacks our energy is precious when
we’re disabled we might work twice as
twice as hard to do that same thing that
you take for granted so when it’s apps
too much of our precious energy to go to
a place that’s not very convenient we
don’t go and we say no when you invite
us we don’t really want to explain why
we’re saying no we don’t want you to
feel bad and one and pick a different
restaurant or a different venue so we
stay quiet so this is our fault too this
is everybody’s fault so I run a
non-profit we serve about 750 people
it started as that fit I masks class and
then we moved seven times
14 years and every time we move we try
to do better we we didn’t have enough
parking there so then we moved to a
place that had a parking lot yeah but
not a great parking lot but I don’t
learn without stumbling we all learn by
stumbling along and each time trying to
pick a new location that would work for
us so our last move we went and looked
at every place we could possibly rent we
wanted to double our space we need more
space and we looked high and low and it
was not an easy look but we found a
place that we thought first of all had a
big enough parking lot right outside the
door they were gonna let us put
automatic openers on they were gonna
widen the door to the bathroom the
vacancy was on the first floor our life
was good and we could afford the rent
and so we were all we could went to an
architect
we got everything planned out we’re
about to sign the contract and the phone
rings and they say the tenants in the
building are not comfortable with having
you in the building the commotion
doesn’t fit with what we do
so the commotion by the way is the
wheelchairs walkers and canes the
commotion is that it may take us a
little longer to get from our car to the
neuro balance space in the building the
commotion is that they’d have to remodel
a bathroom the commotion is that the
choice parking space is right in front
of the door we’re gonna be changed to
handicapped spaces so there were fewer
of them then and their favorite place to
park was was gonna be gone interestingly
I think sometimes discrimination because
that’s what we’re talking about here
sometimes it’s deliberate but more often
it’s inadvertent it’s because we don’t
realize
that what we’re saying hurts or we don’t
realize that discrimination needs to
include people who are disabled and it’s
not just about the color you are or the
sex that you are it’s how how abled you
are and some people would say that we’re
all only temporarily abled we’re born
completely dependent and most of us
leave this world completely dependent as
well but in the middle we don’t realize
that everybody around us has a different
level of ability
we’re differently abled every single one
of us so the 700 people who come to the
centre come because it’s safe place they
come because they want to be able to do
something about their condition and you
can’t control that you have MS or
Parkinson’s or stroke or neuropathy or
ALS but you can control what you do
about it how you react to it how you
react to others how you can educate
others to react to you and to treat you
and so we come to this place where
there’s transportation with a lift that
can get you there where there’s every
space in the first row as a handicapped
space six handicapped bathrooms lowered
counters everything we could possibly
think of no thresholds between different
types of flooring and we come there
because we don’t want to be the elephant
in the room and there you’re in a room
of elephants everybody’s the same
everybody’s the same amount challenged
everybody’s got something they can’t do
and they’re accepted there and so it’s a
place that we belong and it’s a place
for us to build our resilience muscle
because an option B they also talked
about Collette
resilience collective roomy resilience
is about surrounding yourself with other
people who have been through the stage
that you’re going through and are
willing to hang on to you while you feel
you can’t do it and help you learn how
to do it how to be resilient how to keep
going how to push the limits how to find
other people like you I can’t even begin
to tell you what the smiles look like as
they came through the door the first
time and realized that they found a home
everyone wants to volunteer everyone
wants to work the front desk everyone
wants to tell other people people were
warm walking from the other buildings
just to see what it is we’re doing in
there I encourage you not to avert your
eyes not to avoid staring but instead
ask a question ask for us to tell our
stories ask for us to help you when you
plan things when you plan renovations
when you pick a venue to have a party
make sure everybody can come to the
table because we all want to thanks for
having me
you
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