“WE 
ARE 
PEOPLE 
FIRST”
: 
The 
History 
and 
Dynamics 
of 
the 
Self-Advocacy 
Movement 


Shirley 
Paceley 
and 
Amy 
Walker 


May 
26, 
2010 


Vera 
Institute 
of 
Justice 
Conference 
San 
Jose, 
California 



What 
is 
Self-Advocacy? 


• 
“Refers 
to 
the 
civil 
rights 
movement 
for 
people 
with 
developmental…and 
other 
disabilities” 
• 
“People 
with 
disabilities 
taking 
control 
of 
their 
own 
lives” 


• 
“People 
with 
disabilities 
speaking 
up 
for 
themselves” 
• 
“Having 
the 
right 
to 
make 
life 
decisions 
without 
undue 
influence 
or 
control 
by 
others” 
– 
Quotes from 
Wikipedia 

Why 
Self-Advocacy? 


• 
People 
with 
all 
types 
of 
disabilities 
spoke 
up 
for 
their 
rights 
and 
started 
the 
self-
advocacy 
movement 
to 
counter 
the 
effects 
and 
daily 
practices 
of 
OPPRESSION 
and 
people 
using 
LABELS 
to 
“pigeonhole” 
them. 

OPPRESSIONEventheskiesDepictawomanwomaninchains…
womanwomaninchains…

DOG 
FOX 
FIELD 




“Idiot 
Cages”
: 
476-1500 
A.D. 




Witch 
Hunts 




Exorcism/Corporal 
Punishment 




Corporal 
Punishment/Restraint 




Corporal 
Punishment/Restraint 




Asylums 
and 
Poorhouses 




The 
Chains 
of 
Institutionalization 




Institutions 
and 
“Free 
Labor”
1800-1950 




Eugenics 
and 
the 
“Final 
Solution”
: 
1800-1950 




The 
“Medical 
Model” 
of 
Disability: 
1950-1980 
and 
Today 




Christmas 
in 
Purgatory 


Excerpts 
from 
a 
photographic 
essay 
by 
Burton 
Blatt 
and 
Fred 
Kaplan 
©1974 



“There 
is 
hell 
on 
earth, 
and 
in 
America 
there 
is 
special

special 
inferno. 
We 
were 
visitors 
there 
during 
Christmas, 
1965.



“We 
saw 
children 
with 
hands 
tied 
and 
legs 
bound. 
After 
discussions 
with 
attendants 
and 
supervisors 
in 
the 
four 
institutions, 
we 
were 
convinced 
that 
one 
of 
the 
major 
reasons 
for 
the 
heavy 
use 
of 
solitary 
confinement 
and 
physical 
restraints 
was 
the 
extraordinary 
shortage 
of 
staff 
...
" 



"In 
some 
of 
the 
children's 
dormitories, 
we 
observed 
"nursery 
programs.
" 
What 
surprised 
us 
most 
was 
their 
scarcity 
and 
primitiveness 
of 
those 
i 
i 
Th 
f

in 
operation. 
Therefore, 
we 
were 
not 
unprepared 
to 
see 
several 
children 
with 
severe 
head 
lacerations. 
We 
were 
told 
these 
were 


head 
bangers.



"The 
living 
quarters 
for 
older 
men 
and 
women, 
were, 
for 
the 
most 
part, 
gloomy 
and 
sterile. 
There 
were 
the 
rows 
and 
rows 
of 
benches 
on 
which 
sat 
countless 
human 
beings, 
in 
silent 
rooms 
waiting

in 
silent 
rooms, 
waiting 
for 
dinner 
call 
or 
bedtime. 
We 
saw 
resident 
after 
resident 
in 
“institutional 
garb.” Sometimes, 
the 
women 
wore 
shrouds 
inside 
out.
" 



We 
All 
Have… 


A 
brief 
presentation 
on 
our 
human 
rights 



The Legacy of Institutions 

FourCriticalQuestions:

“Those 
who 
deny 
freedom 
to 
others, 
deserve 
it 
not 
for 
themselves.”

themselves. 


Abraham 
Lincoln, 
April 
6th, 
1859 



The 
Myth 
of 
Freedom


y 


Normalization 
and 
De-Institutionalization 



Amy 
Speaks 
Out 




LABELS 



Starring 
our 
friend, 
Mr. 
Yuck™
! 



burden


burden 



daughter


daughter 



poor


poor 



victim


victim 



mentally 
retarded 



insane/crazyy


/ 



teacher


teacher 



slow


slow 



friend


friend 



college 
student 



advocate


advocate 



statewide 
committee


committee 
member 



author


author 



stupid


stupid 



mother


mother 



INCOMPETENT 



*
A 
legal 
term 
*Also 
a 
label 




“Wordsare,ofcourse,the 
mmostpowerfuldrugusedby


ostpowerfuldrugusedby 
mankind.
” 


-Rudyard 
Kipling 



HISTORY“It’snotsomethingyoufindinabook,butwithinallofourlives…”
--AmyWalkerabook,butwithinallofourlives…”
--AmyWalker

Self-Advocacy: 
A 
Timeless 
Idea 


• 
People 
have 
been 
practicing 
self-
advocacy—fighting 
for 
their 
rights 
and 
speaking 
up 
for 
what 
they 
want 
and 
need—since 
the 
beginning 
of 
time, 
but 
need 
since 
the 
beginning 
of 
time, 
but 
only 
in 
the 
late 
20th 
century 
did 
they 
begin 
to 
organize 
and 
rally 
within 
official 
groups. 




The 
Self-Advocacy 
Movement 
Begins 


• 
In 
the 
late 
1960’
s 
in 
Sweden, 
Dr. 
Bengt 
Nirje 
helped 
people 
with 
disabilities
with 
disabilities 
organize 
a 
club. 
The 
club 
had 
no 
leaders; 
members 
would 
plan 
a 
trip 
into 
the 
broader 
community, 
go 
on 
it, 
and 
then 
discuss 
their 
experiences. 




The 
Self-Advocacy 
Movement 
Begins 


• 
“This 
is 
akin 
to 
any 
decent 
revolt. 
Some 
of 
the…adults 
themselves 
want 
to 
play 
new 
role 
in 
society, 
to 
create 
a 
new 
image 
of 
themselves 
in 
their 
own 
eyes, 
in 
the 
eyes 
of 
their 
parents 
and 
in 
the 
eyes 
of 
the 
general 
public.
” 
–Dr. 
Bengt 
Nirje 

The 
Self-Advocacy 
Movement 
Progresses 


• 
1973—People 
First 
formed 
in 
Salem, 
OR 
• 
1991—Self-Advocates 
Becoming 
Empowered 
(SABE) 
formed 
in
Empowered 
(SABE) 
formed 
in 
Nashville, 
TN 


• 
1995—Self-advocacy 
groups 
form 
all 
over 
Present 
the 
USA 
What 
does 
the 
future 
hold??
? 



DYNAMICS 


“…the 
wheel 
keeps 
on 
turning 
and 
turning 
and 
turning, 
and 
Nothing’s 
disturbing 
the 
way 
it 
goes 
around..


--Edie 
Brickell 
and 
the 
New 
Bohemians, 
“The 
Wheel” 



The 
Dynamics 
of 
Self-Advocacy 


• 
We 
are 
PEOPLE 
FIRST! 
• 
NOTHING 
ABOUT 
US 
WITHOUT 
US!!
! 
• 
We 
speak 
up 
for 
ourselves 
speak 
up 
for 
ourselves 
• 
We 
and 
others. 
• 
We 
are 
NOT 
our 
labels. 
• 
We 
have 
human 
rights. 
• 
Our 
dreams 
matter 
far 
more 
than 
our 
disabilities. 

The 
Dynamics 
of 
Self-Advocacy 


• 
We 
have 
the 
right 
to 
make 
decisions. 
• 
We 
know 
ourselves. 
We 
know 
what 
we 
need 
and 
what 
is 
“best” 
for 
us. 
• 
We 
are 
capable, 
strong 
and 
wonderful. 
• 
We 
have 
different 
gifts 
and 
talents. 

The 
Dynamics 
of 
Self-Advocacy 


• 
We 
sometimes 
face 
barriers 
that 
SOCIETY 
puts 
in 
our 
way. 
Help 
us 
break 
them! 
• 
Sometimes 
we 
have 
to 
“give 
and 
take” 
when 
we 
work 
with 
other 
advocates 
and 
advocate 
groups. 
• 
However, 
OUR 
voices 
COUNT 
and 
MATTER! 



…the 
greater 
the 
resistance, 
the 
higher 
the 
kite 
flies… 


--Oreida 
Horn 
Anderson 



Thoughts 
on 
Self-Advocacy 


“Self-advocacy 
is 
fundamentally 
about 
true 


equality, 
respect, 
and 
power, 
and 
about 
recognizing 
and 
changing 
the 
current 
imbalances 
in 
all 
of 
those 
things. 
Real 
selfimbalances 
in 
all 
of 
those 
things. 
Real 
self-
advocacy 
will 
always 
upset 
the 
status 
quo 
in 
some 
way.
” 



—A.M. 
Baggs, 
2005 



PARTNERSHIP“Donotwork onme.Work withme.”
--ACredoforSupport“Donotwork onme.Work withme.”
--ACredoforSupport

Partnering 
with 
Women 
with 
Disabilities 


• 
Invite 
them 
to 
take 
part 
in 
your 
project 
by 
serving 
on 
boards, 
committees, 
and 
subcommittees. 

Partnering 
with 
Women 
with 
Disabilities 


• 
At 
your 
project 
meetings, 
use 
plain 
language. 
Don’t 
use 
lots 
of 
jargon, 
acronyms, 
and 
technical 
terms. 
NO

People 
First 
Language 


Put 
people 
first 
D 
t 
fo 
di 
bilit

Do 
not 
focus 
on 
disability 
Do 
not 
portray 
successful 
people 
with 


disabilities 
as 
superhuman 


Do 
not 
sensationalize 
a 
disability 


Do 
not 
use 
general 
labels 




Partnering 
with 
Women 
with 
Disabilities 


• 
Invite 
them 
to 
complete 
critical 
tasks 
for 
your 
project 
such 
as 
reports, 
interviews, 
needs 
assessments, 
surveys, 
and 
data 
analysis.
analysis. 




Partnering 
with 
Women 
with 
Disabilities 


• 
Make 
sure 
that 
all 
the 
materials 
at 
your 
project 
meetings 
are 
in 
a 
format 
that 
everyone 
can 
understand 
(large 
print, 
pictures, 
Braille, 
etc.)
pictures, 
Braille, 
etc.
) 




Partnering 
with 
Women 
with 
Disabilities 


• 
Listen 
carefully 
to 
the 
ideas, 
insights 
and 
suggestions 
that 
women 
with 
disabilities 
have. 
Thorough 
discussions 
always 
help! 

Partnering 
with 
Women 
with 
Disabilities 


• 
Provide 
for 
accommodations 
such 
as 
sign 
language 
interpreters 
and 
service 
animals. 

Partnering 
with 
Women 
with 
Disabilities 


• 
Most 
of 
all, 
be 
proud 
of 
who 
you 
ALL 
are 
and 
of 
the 
vital 
work 
you’re 
doing 
to 
change 
the 
service 
system 
for 
people 
with 
disabilities 
who 
experience 
violence! 

Blue 
Tower 
Training 
Center 
(BTTC) 
is 
a 
division 
of 
Macon 
Resources, 
Inc. 
(MRI) 
which 
provides 
training, 
consultation, 
training 
materials 
and 
resources 
on 
a 
national 
as 
well 
as 
international 
basis. 


Shirley 
Paceley 
Amy 
Walker 


P.O. 
Box 
2760 
P.O. 
Box 
2760 
Decatur, 
IL 
62524-2760 
Decatur, 
IL 
62524-2760 
spaceley@maconresources.org 
awalker@maconresources.org 


Learn 
more 
about 
BTTC 
by 
logging 
on 
to 


http://www.bluetowertraining.com