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