I have been swept away by a whirlwind of activism from the disability community
activism from the disability community
activism from the disability community here in Pittsburgh now this is a
here in Pittsburgh now this is a
here in Pittsburgh now this is a community where I have quickly found a
community where I have quickly found a
community where I have quickly found a sense of family see even though it
sense of family see even though it
sense of family see even though it doesn’t look like it I’m a person with
doesn’t look like it I’m a person with
doesn’t look like it I’m a person with multiple disabilities I am autistic and
multiple disabilities I am autistic and
multiple disabilities I am autistic and I have anxiety depression and mobility
I have anxiety depression and mobility
I have anxiety depression and mobility impairments a bad knee and shoulder now
impairments a bad knee and shoulder now
impairments a bad knee and shoulder now these experiences certainly influence
these experiences certainly influence
these experiences certainly influence how I live my life but they also inspire
how I live my life but they also inspire
how I live my life but they also inspire me to reach out and make the world a
me to reach out and make the world a
me to reach out and make the world a more accessible place though the
more accessible place though the
more accessible place though the Americans with Disabilities Act
Americans with Disabilities Act
Americans with Disabilities Act guarantees many rights for people with
guarantees many rights for people with
guarantees many rights for people with disabilities here in the United States
disabilities here in the United States
disabilities here in the United States the work simply isn’t done so today I
the work simply isn’t done so today I
the work simply isn’t done so today I invite you to get involved in a movement
invite you to get involved in a movement
invite you to get involved in a movement with a long history and I believe a
with a long history and I believe a
with a long history and I believe a great future now this is a history that
great future now this is a history that
great future now this is a history that is not often taught in our schools but
is not often taught in our schools but
is not often taught in our schools but when the story is told the story of the
when the story is told the story of the
when the story is told the story of the disability rights movement here in the
disability rights movement here in the
disability rights movement here in the United States begins with the
United States begins with the
United States begins with the Independent Living movement as will come
Independent Living movement as will come
Independent Living movement as will come as no surprise to those of you who are
as no surprise to those of you who are
as no surprise to those of you who are familiar with the history of the school
familiar with the history of the school
familiar with the history of the school the Independent Living movement finds
the Independent Living movement finds
the Independent Living movement finds its roots at Berkeley in the 1960s Edie
its roots at Berkeley in the 1960s Edie
its roots at Berkeley in the 1960s Edie Roberts often considered the father of
Roberts often considered the father of
Roberts often considered the father of the movement was the first student with
the movement was the first student with
the movement was the first student with significant support needs to attend the
significant support needs to attend the
significant support needs to attend the University where he would later found
University where he would later found
University where he would later found the first Center for independent living
the first Center for independent living
the first Center for independent living in response to the paternalism often
in response to the paternalism often
in response to the paternalism often faced by people with disabilities from
faced by people with disabilities from
faced by people with disabilities from our caregivers and institutions
our caregivers and institutions
our caregivers and institutions proponents of the Independent Living
proponents of the Independent Living
proponents of the Independent Living philosophy argue that people with
philosophy argue that people with
philosophy argue that people with disabilities are the best experts on
disabilities are the best experts on
disabilities are the best experts on what they need and should be given the
what they need and should be given the
what they need and should be given the same freedom of choice offered to those
same freedom of choice offered to those
same freedom of choice offered to those who are currently not disabled this
who are currently not disabled this
who are currently not disabled this philosophy places an emphasis on
philosophy places an emphasis on
philosophy places an emphasis on speaking out about one’s own needs
speaking out about one’s own needs
speaking out about one’s own needs opinions and desires the movement
opinions and desires the movement
opinions and desires the movement provided the foundation for activism
provided the foundation for activism
provided the foundation for activism around the Americans with Disabilities
around the Americans with Disabilities
around the Americans with Disabilities Act and related legislation
Act and related legislation
Act and related legislation and continues its strong work today
and continues its strong work today
and continues its strong work today though the Independent Living movement
though the Independent Living movement
though the Independent Living movement found its roots at Berkeley Pennsylvania
found its roots at Berkeley Pennsylvania
found its roots at Berkeley Pennsylvania was and continues to be a leader in
was and continues to be a leader in
was and continues to be a leader in moving people out of institutional care
moving people out of institutional care
moving people out of institutional care settings into a life in the community in
settings into a life in the community in
settings into a life in the community in the 1970s Pennsylvania had about 40
the 1970s Pennsylvania had about 40
the 1970s Pennsylvania had about 40 state centers for mental retardation and
state centers for mental retardation and
state centers for mental retardation and while there was growing awareness of the
while there was growing awareness of the
while there was growing awareness of the problems with institutional care most
problems with institutional care most
problems with institutional care most people were oblivious to the horrors of
people were oblivious to the horrors of
people were oblivious to the horrors of the institution in Pennsylvania the
the institution in Pennsylvania the
the institution in Pennsylvania the common procedure dictated that when
common procedure dictated that when
common procedure dictated that when family members came to visit residents
family members came to visit residents
family members came to visit residents would be showered dressed in clean
would be showered dressed in clean
would be showered dressed in clean clothing medicated till they were calm
clothing medicated till they were calm
clothing medicated till they were calm and brought into a clean completely
and brought into a clean completely
and brought into a clean completely separate visiting area yet actual living
separate visiting area yet actual living
separate visiting area yet actual living conditions were horrendous people were
conditions were horrendous people were
conditions were horrendous people were left unclothed sitting in their own
left unclothed sitting in their own
left unclothed sitting in their own filth
filth
filth some children never even learned to walk
some children never even learned to walk
some children never even learned to walk not because they couldn’t but because
not because they couldn’t but because
not because they couldn’t but because there wasn’t enough staff to give them
there wasn’t enough staff to give them
there wasn’t enough staff to give them time out of their cribs and it wasn’t
time out of their cribs and it wasn’t
time out of their cribs and it wasn’t until Bill Baldy knees expose of the
until Bill Baldy knees expose of the
until Bill Baldy knees expose of the Pennhurst facility titled suffer the
Pennhurst facility titled suffer the
Pennhurst facility titled suffer the little children that the larger public
little children that the larger public
little children that the larger public became aware of the truth about
became aware of the truth about
became aware of the truth about institutions that they were understaffed
institutions that they were understaffed
institutions that they were understaffed and full of abuse now since then many
and full of abuse now since then many
and full of abuse now since then many changes have occurred on both a national
changes have occurred on both a national
changes have occurred on both a national state and local level and yet our rights
state and local level and yet our rights
state and local level and yet our rights as Americans with disabilities continue
as Americans with disabilities continue
as Americans with disabilities continue to be threatened
to be threatened
to be threatened we are underemployed and undereducated
we are underemployed and undereducated
we are underemployed and undereducated when compared to our peers and contrary
when compared to our peers and contrary
when compared to our peers and contrary to popular opinion we are more often the
to popular opinion we are more often the
to popular opinion we are more often the victims of crimes than the perpetrators
victims of crimes than the perpetrators
victims of crimes than the perpetrators and in the past year alone over a
and in the past year alone over a
and in the past year alone over a hundred people with disabilities were
hundred people with disabilities were
hundred people with disabilities were murdered by their caregivers and that’s
murdered by their caregivers and that’s
murdered by their caregivers and that’s just what was reported on by the media
just what was reported on by the media
just what was reported on by the media can you imagine what it would be like to
can you imagine what it would be like to
can you imagine what it would be like to be murdered by someone that you trusted
be murdered by someone that you trusted
be murdered by someone that you trusted and loved just because they thought that
and loved just because they thought that
and loved just because they thought that your life wasn’t worth living
your life wasn’t worth living
your life wasn’t worth living this is a reality that people with
this is a reality that people with
this is a reality that people with disabilities face in the United States
disabilities face in the United States
disabilities face in the United States and abroad everyday and it’s not just a
and abroad everyday and it’s not just a
and abroad everyday and it’s not just a struggle that we face when we’re
struggle that we face when we’re
struggle that we face when we’re thinking about our families did you know
thinking about our families did you know
thinking about our families did you know that over 50 people with disabilities
that over 50 people with disabilities
that over 50 people with disabilities were arrested in the rotunda of the
were arrested in the rotunda of the
were arrested in the rotunda of the Capitol building in DC just this past
Capitol building in DC just this past
Capitol building in DC just this past week they were protesting against the
week they were protesting against the
week they were protesting against the American health care act because they
American health care act because they
American health care act because they believe the act would take away crucial
believe the act would take away crucial
believe the act would take away crucial health care benefits and they’re not
health care benefits and they’re not
health care benefits and they’re not wrong
wrong
wrong see the Affordable Care Act provided
see the Affordable Care Act provided
see the Affordable Care Act provided necessary life-sustaining
necessary life-sustaining
necessary life-sustaining affordable care for many of us and if it
affordable care for many of us and if it
affordable care for many of us and if it is repealed in part or in whole we’re
is repealed in part or in whole we’re
is repealed in part or in whole we’re worried about our continued ability to
worried about our continued ability to
worried about our continued ability to survive now I’m lucky I have great
survive now I’m lucky I have great
survive now I’m lucky I have great health care through the University of
health care through the University of
health care through the University of Pittsburgh but when I graduate I am
Pittsburgh but when I graduate I am
Pittsburgh but when I graduate I am basically uninsurable
basically uninsurable
basically uninsurable without the ACA s protections for
without the ACA s protections for
without the ACA s protections for pre-existing conditions and if I’m not
pre-existing conditions and if I’m not
pre-existing conditions and if I’m not able to afford my medications or the
able to afford my medications or the
able to afford my medications or the therapy that I need to stay alive I
therapy that I need to stay alive I
therapy that I need to stay alive I don’t know what will happen
don’t know what will happen
don’t know what will happen and while Pennhurst the subject of that
and while Pennhurst the subject of that
and while Pennhurst the subject of that expose was ultimately closed in the late
expose was ultimately closed in the late
expose was ultimately closed in the late 1980s
1980s
1980s there are many institutions in
there are many institutions in
there are many institutions in Pennsylvania that are still active did
Pennsylvania that are still active did
Pennsylvania that are still active did you know that there are over 3,400
you know that there are over 3,400
you know that there are over 3,400 people with disabilities 1,600 children
people with disabilities 1,600 children
people with disabilities 1,600 children living in institutions in Pennsylvania
living in institutions in Pennsylvania
living in institutions in Pennsylvania imagine what it would be like to grow up
imagine what it would be like to grow up
imagine what it would be like to grow up in a hospital like setting maybe you get
in a hospital like setting maybe you get
in a hospital like setting maybe you get to go home on the weekends or over the
to go home on the weekends or over the
to go home on the weekends or over the holidays but the vast majority of your
holidays but the vast majority of your
holidays but the vast majority of your life is spent in a location completely
life is spent in a location completely
life is spent in a location completely different from and separate from your
different from and separate from your
different from and separate from your peers and the thing is community based
peers and the thing is community based
peers and the thing is community based care is much less expensive than
care is much less expensive than
care is much less expensive than institutional care and yet there are
institutional care and yet there are
institutional care and yet there are over 13,000 people with disabilities in
over 13,000 people with disabilities in
over 13,000 people with disabilities in Pennsylvania alone who are on a waiting
Pennsylvania alone who are on a waiting
Pennsylvania alone who are on a waiting list for community-based services and
list for community-based services and
list for community-based services and what this means is that they have
what this means is that they have
what this means is that they have completely waived their right to
completely waived their right to
completely waived their right to institutional care and are not receiving
institutional care and are not receiving
institutional care and are not receiving any of the supports and services that
any of the supports and services that
any of the supports and services that they
they
they this is a major problem they wait and if
this is a major problem they wait and if
this is a major problem they wait and if they change their minds the state would
they change their minds the state would
they change their minds the state would be forced to pick up the tab for
be forced to pick up the tab for
be forced to pick up the tab for institutional care tomorrow but they
institutional care tomorrow but they
institutional care tomorrow but they wait waiting to be granted what is for
wait waiting to be granted what is for
wait waiting to be granted what is for the state the more affordable option so
the state the more affordable option so
the state the more affordable option so that’s why I’m inviting you to get
that’s why I’m inviting you to get
that’s why I’m inviting you to get involved in a movement that is ongoing
involved in a movement that is ongoing
involved in a movement that is ongoing to solve many of these problems that we
to solve many of these problems that we
to solve many of these problems that we face here in Pennsylvania across the
face here in Pennsylvania across the
face here in Pennsylvania across the nation and across the world now I don’t
nation and across the world now I don’t
nation and across the world now I don’t expect you to go to every protest I
expect you to go to every protest I
expect you to go to every protest I don’t expect you to get arrested and I
don’t expect you to get arrested and I
don’t expect you to get arrested and I don’t expect you to be a lobbyist like I
don’t expect you to be a lobbyist like I
don’t expect you to be a lobbyist like I am but I do believe that everyone should
am but I do believe that everyone should
am but I do believe that everyone should be an advocate for accessibility so if
be an advocate for accessibility so if
be an advocate for accessibility so if you want to get involved I’ve got five
you want to get involved I’ve got five
you want to get involved I’ve got five steps to being a disability advocate now
steps to being a disability advocate now
steps to being a disability advocate now I know I know before anybody says
I know I know before anybody says
I know I know before anybody says anything I’m working on turning them
anything I’m working on turning them
anything I’m working on turning them into ramps but for now steps is what
into ramps but for now steps is what
into ramps but for now steps is what we’ve got still number one realize that
we’ve got still number one realize that
we’ve got still number one realize that tomorrow you could be disabled the
tomorrow you could be disabled the
tomorrow you could be disabled the disability community is the largest
disability community is the largest
disability community is the largest minority community in the United States
minority community in the United States
minority community in the United States and we have a saying that the longer you
and we have a saying that the longer you
and we have a saying that the longer you live whether through old age or injury
live whether through old age or injury
live whether through old age or injury the more likely you are to become
the more likely you are to become
the more likely you are to become disabled so when you’re advocating for
disabled so when you’re advocating for
disabled so when you’re advocating for accessibility
accessibility
accessibility you’re not just advocating for me or
you’re not just advocating for me or
you’re not just advocating for me or others who are currently disabled you’re
others who are currently disabled you’re
others who are currently disabled you’re advocating for your future self second
advocating for your future self second
advocating for your future self second recognize and empower leaders with
recognize and empower leaders with
recognize and empower leaders with disabilities we cannot effectively solve
disabilities we cannot effectively solve
disabilities we cannot effectively solve the crises of health care
the crises of health care
the crises of health care institutionalization and long waiting
institutionalization and long waiting
institutionalization and long waiting lists for services without the input of
lists for services without the input of
lists for services without the input of people with disabilities and this means
people with disabilities and this means
people with disabilities and this means not just reserving a special chair for
not just reserving a special chair for
not just reserving a special chair for us at the table but inviting us as
us at the table but inviting us as
us at the table but inviting us as equals as advocates for a broader cause
equals as advocates for a broader cause
equals as advocates for a broader cause advocates for more than just ourselves
advocates for more than just ourselves
advocates for more than just ourselves now
now
now I am a proud self-advocate thrilled to
I am a proud self-advocate thrilled to
I am a proud self-advocate thrilled to be part of a long legacy of
be part of a long legacy of
be part of a long legacy of self-advocacy but I’m also a
self-advocacy but I’m also a
self-advocacy but I’m also a professional working in the advocacy
professional working in the advocacy
professional working in the advocacy field and I and others like me deserve
field and I and others like me deserve
field and I and others like me deserve you respect that comes both with lived
you respect that comes both with lived
you respect that comes both with lived experience and also our professional
experience and also our professional
experience and also our professional expertise third recognize our
expertise third recognize our
expertise third recognize our independence and agency in the places
independence and agency in the places
independence and agency in the places where we live and learn
where we live and learn
where we live and learn certainly state local national national
certainly state local national national
certainly state local national national governments educational and healthcare
governments educational and healthcare
governments educational and healthcare institutions are beginning to recognize
institutions are beginning to recognize
institutions are beginning to recognize the importance of providing
the importance of providing
the importance of providing consumer-directed community-based care
consumer-directed community-based care
consumer-directed community-based care but the work isn’t done so if you work
but the work isn’t done so if you work
but the work isn’t done so if you work or plan to work in health care or
or plan to work in health care or
or plan to work in health care or education support the ongoing processes
education support the ongoing processes
education support the ongoing processes of ending institutionalization and
of ending institutionalization and
of ending institutionalization and ending waiting lists now I know
ending waiting lists now I know
ending waiting lists now I know transition is difficult transition that
transition is difficult transition that
transition is difficult transition that takes time and right now in Pennsylvania
takes time and right now in Pennsylvania
takes time and right now in Pennsylvania we don’t really have these support
we don’t really have these support
we don’t really have these support services the staff or the money to
services the staff or the money to
services the staff or the money to effectively and easily give people the
effectively and easily give people the
effectively and easily give people the transition that they deserve but change
transition that they deserve but change
transition that they deserve but change is coming so if you are involved in
is coming so if you are involved in
is coming so if you are involved in these areas don’t stand in the way don’t
these areas don’t stand in the way don’t
these areas don’t stand in the way don’t continue to say no we can’t do that
continue to say no we can’t do that
continue to say no we can’t do that choose to be part of the process
choose to be part of the process
choose to be part of the process fourth recognize our right to work if we
fourth recognize our right to work if we
fourth recognize our right to work if we want to if you are an employer
want to if you are an employer
want to if you are an employer responsible for hiring or a potential
responsible for hiring or a potential
responsible for hiring or a potential coworker so basically everyone remember
coworker so basically everyone remember
coworker so basically everyone remember to speak about people with disabilities
to speak about people with disabilities
to speak about people with disabilities as competent despite common myths most
as competent despite common myths most
as competent despite common myths most accommodations are not expensive or
accommodations are not expensive or
accommodations are not expensive or time-consuming
time-consuming
time-consuming finally beyond recognizing our
finally beyond recognizing our
finally beyond recognizing our independence
independence
independence and agency realize the benefits that
and agency realize the benefits that
and agency realize the benefits that people with disabilities bring to
people with disabilities bring to
people with disabilities bring to society we need new ways of talking
society we need new ways of talking
society we need new ways of talking about disability ways that emphasize
about disability ways that emphasize
about disability ways that emphasize interdependence in addition to
interdependence in addition to
interdependence in addition to independence as we continue to reach to
independence as we continue to reach to
independence as we continue to reach to advocate for better supports and
advocate for better supports and
advocate for better supports and services for more inclusion and
services for more inclusion and
services for more inclusion and integration and for less stigma about
integration and for less stigma about
integration and for less stigma about disability we need to build on our
disability we need to build on our
disability we need to build on our Independent Living philosophy when we as
Independent Living philosophy when we as
Independent Living philosophy when we as people with disabilities speak to our
people with disabilities speak to our
people with disabilities speak to our neighbors to our fellow citizens when
neighbors to our fellow citizens when
neighbors to our fellow citizens when you as our allies do the same we need to
you as our allies do the same we need to
you as our allies do the same we need to emphasize that we’re no longer just
emphasize that we’re no longer just
emphasize that we’re no longer just talking about living independently we’re
talking about living independently we’re
talking about living independently we’re talking about living interdependently
talking about living interdependently
talking about living interdependently that we as people with disabilities to
that we as people with disabilities to
that we as people with disabilities to not simply independently dictate how our
not simply independently dictate how our
not simply independently dictate how our lives will play out but that we do so in
lives will play out but that we do so in
lives will play out but that we do so in a way that provides a benefit to those
a way that provides a benefit to those
a way that provides a benefit to those around us that we have much to offer not
around us that we have much to offer not
around us that we have much to offer not just to ourselves but to our community
just to ourselves but to our community
just to ourselves but to our community we are taxpayers were organ donors or
we are taxpayers were organ donors or
we are taxpayers were organ donors or family members we’re co-workers were
family members we’re co-workers were
family members we’re co-workers were bosses we’re constituents we’re citizens
bosses we’re constituents we’re citizens
bosses we’re constituents we’re citizens or partners and we’re friends now none
or partners and we’re friends now none
or partners and we’re friends now none of these five steps is particularly
of these five steps is particularly
of these five steps is particularly time-consuming they require more an
time-consuming they require more an
time-consuming they require more an attitude change and a slight shift in
attitude change and a slight shift in
attitude change and a slight shift in how you approach how you live learn and
how you approach how you live learn and
how you approach how you live learn and work I as a disabled person am looking
work I as a disabled person am looking
work I as a disabled person am looking for allies in this work and all of you
for allies in this work and all of you
for allies in this work and all of you could fill that role nothing about us
could fill that role nothing about us
could fill that role nothing about us without us has long been the rallying
without us has long been the rallying
without us has long been the rallying cry of the disability rights movement
cry of the disability rights movement
cry of the disability rights movement today we as people with disabilities are
today we as people with disabilities are
today we as people with disabilities are extending this call and those of you who
extending this call and those of you who
extending this call and those of you who claim to be our allies must respect it
claim to be our allies must respect it
claim to be our allies must respect it we are leaders in advocacy and we bring
we are leaders in advocacy and we bring
we are leaders in advocacy and we bring more to the table than what we asked for
more to the table than what we asked for
more to the table than what we asked for the same rights and access as everyone
the same rights and access as everyone
the same rights and access as everyone else look at and feel the chairs that
else look at and feel the chairs that
else look at and feel the chairs that you are sitting on today now those are
you are sitting on today now those are
you are sitting on today now those are provided for you as an accommodation
provided for you as an accommodation
provided for you as an accommodation because you all woke up this morning and
because you all woke up this morning and
because you all woke up this morning and decided to leave the house not even
decided to leave the house not even
decided to leave the house not even thinking about bringing a chair with you
thinking about bringing a chair with you
thinking about bringing a chair with you now I bet those chairs weren’t exactly
now I bet those chairs weren’t exactly
now I bet those chairs weren’t exactly cheap
cheap
cheap they look pretty cushy to me you all get
they look pretty cushy to me you all get
they look pretty cushy to me you all get chairs we’re still fighting for the
chairs we’re still fighting for the
chairs we’re still fighting for the ability to get in the door in the
ability to get in the door in the
ability to get in the door in the bathroom at the places where we live
bathroom at the places where we live
bathroom at the places where we live learn and work so as the next generation
learn and work so as the next generation
learn and work so as the next generation of politicians educators and employers I
of politicians educators and employers I
of politicians educators and employers I am asking you when you are sitting at
am asking you when you are sitting at
am asking you when you are sitting at that decision-making table look around
that decision-making table look around
that decision-making table look around see who wasn’t invited
see who wasn’t invited
see who wasn’t invited see who’s being purposefully excluded
see who’s being purposefully excluded
see who’s being purposefully excluded and make sure that you are doing nothing
and make sure that you are doing nothing
and make sure that you are doing nothing about us without us
”
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