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