Speaking for Myself: Reflections on
“Passing” and Labels, 2002
Ruthie-Marie Beckwith, Ph.D.
Abstract: Poverty is viewed as one of the major contributors
to stigma in this personal essay on labeling
and its impact on people’s humanity. Mental illness,
a disability with no visibly apparent indicators,
is particularly explored from the author’s own experience
in searching for recovery. Working toward
empowerment for oneself and others is presented as
a solution to overcoming cultural barriers.
The Opryland Direct Action Prose Poem, 1993
Sitting in the minimum secure facility with fifty
women—all of whom have disabilities. We have
been arrested for standing in the driveway. Doesn’t
seem all that much like civil disobedience but it qualifies
for criminal trespassing. “Anne” tells her story
to a woman next to her. Both in wheelchairs, they
share their histories. “Able-bodied” me eavesdrops—
I am not included in their worldview now.
“Anne” tells the story of her brother threatening
her with a gun when she screamed for help to get off
the commode. As she described telling him to just
go ahead and shoot, I flashback to the front yard
where my mother aimed a shotgun at my stepfather
who was standing directly behind me. “Anne” and I
were both in the way. She found a way to claim her
personal power. I am transformed into a deer, my
eyes locked on the gun, forever frozen in time. (1)
It’s late at night and I’m up pondering how it is
that I could possibly have something in common
with Franklin D. Roosevelt, a national legend, highly
regarded, and much revered figure in the world of
disability. It’s there though; just one tiny similarity
except mine isn’t taking a national debate to bring
out into the open. He “passed” on being seen as a
person who used a wheelchair and I, until very recently,
“passed” on letting people outside of my closest
friends and colleagues know I have mental health
labels.
Thoughts and feelings about being labeled and
being the labeler continue to abound. Characters
on a recent television episode of the American TV
show CSI (Crime Scene Investigation) even talked
about the difference between having a visible disability
and an invisible disability. A glorious new
publication by Self Advocates Becoming Empowered
2(2002), Sticks ‘n’ Stones, gives voice to the feelings
of the labeled people whose movement was launched
on this very debate. Other segments of the disability
rights movement insist on using a label as a way
of proclaiming their identity and framing their own
cultural experience. Some professionals and family
members have never abandoned the old labels for
the new nor accepted People First 3 language proscriptions
while others disparage the whole enterprise.
Still others condemn the whole People First
language effort as language tyranny being carried out
on by an out of control societal wave of mandating
what’s “politically correct.”
In my life as an advocate during the last 20 years,
I respected and carried out the mandate of the statement
issued by some folks long ago in Oregon by
People First International: “We believe labels hurt
people…” You all know the yellow poster, “Label
Jars, Not People”? In 1994, I testified under oath at
a deposition that I couldn’t and wouldn’t label the
people I worked for even though I had the credentials
that the attorney for the Voice of the Retarded
thought were satisfactory to meet his demand to do
so. However, in all of the time that I campaigned
actively against the process of labeling people, I was
also campaigning heavily against the demons of a
past that ended with a few more letters being added
after my name: PTSD4, DD-NOS5, along with the
words, depression, anxiety, and one which strikes
terror into the heart of any good behaviorist, SIB6.
At the same time, the campaign against those demons
gave me “Other Professional and Volunteer
Experiences” to add to my resume like, “Being an
advocate on a locked in-patient unit for someone
dumped into seclusion for 24 hours while you’re an
in-patient yourself ” and “Criminal justice work on
the inside while serving five days for DWD (Driving
While Disassociated)”.
For a number of reasons, I never brought these
personal experiences to the table as examples when I
worked as a “professional” advocate and sought to
empower others to speak for themselves. I saw myself
then as almost a tool that the people I served
had at hand to open themselves up, connect with
others, use as a guide and then springboard from as
the leaders and owners of their movement. I, as the
“advisor,” was seen as at-one-with, but not “of” their
movement. And, because I was cast in that role, I
never felt like I was free to share/explore any other
identity, as others who had disabilities but were leaders
within the disability rights movement were able
to do. Finally, as I continued to serve in the role of
the “advisor,” I couldn’t help wondering, on a personal
level, what life’s little quirk had led me to blunder
into being an organizer for and of a movement
in which I would never feel comfortable disclosing
who and how I came to be the person I am.
Going it Alone vs. Going it Together
Yesterday, here in Nashville, Bobby Silverstein
was the wonderful keynote speaker at our annual
State Independent Living Council Conference. He
shared the admonishment that Justin Dart had given
him regarding his role in the disability rights movement
after he had stepped down from his work with
the Senate Sub-committee on Disability Policy:
Teach. Justin gave me a similar missive when I left
People First of Tennessee, Inc.: Organize. Continue
to organize but with a different focus. He told me
to put my organizing expertise to use with people
who have mental illness, confident I guess that I
would somehow figure out how to get in the door.
Herein lies the heart of my midnight dilemma—
Justin’s missive and the very real fact that in reaching
out to the mental health consumers’ movement,
I feel I have found a place where for the first time in
my life I can truly be myself with all of my bumps,
and warts, and scars hanging out there for all to see.
At Our Place, our local mental health drop-in center,
there was some initial confusion when I landed
on their doorstep, but I was readily accepted into
the fold. Acceptance is a heady thing. Of course, I
was labeled “high functioning” because I “pass” so
well and as such, given work to do. I grimaced at
the “high functioning” remark and accepted the
work.
At the time I appeared at Our Place’s doorstep I
was: supporting myself with consulting projects, a
divorced single parent of three, facing breast surgery,
and learning to accept that lightening can indeed
strike a person more than once. I was also taking
enough drugs to admirably hold my own in any
pharmaceutical conversation with the other mental
health consumers who struggled to be there on a
daily basis. The work I was given and accepted was
teaching consumer education (B.R.I.D.G.E.S.)7
classes once a week. That, and the sense of real personal
empowerment I felt at being a valued member
of a consumer run organization, became one of the
primary recovery vehicles that carried me back to
the main road of the disability community’s struggles.
So here I am facing the biggest irony and conundrum
of my personal/professional life: the ticket
into the mental health consumer (c/s/x/r)8 movement
means taking up the mantle of being a labeled
person. I know I am not alone. I’ve spoken with
friends who are struggling with the prospects of
“crossing over,” of “coming out,” of “being yourself.”
We’ve talked about the constraints we’ve felt in the
past and why we haven’t done it until now. We’ve
talked about our “cognitive dissonance” with the
whole labeling thing.
Another theme we’ve explored is how readily
we’re accepted by other mental health consumers as
legitimate spokespersons in our own right on our
word alone, but rejected as such by some of our fellow
colleagues in the disability rights movements,
some of whom we’ve worked with for over half our
lives. We’ve talked about how we have worked so
closely with people across the disability community
and yet we cannot, in this community, find a home
of our own. We’ve talked about how the plurality of
our various roles we’ve played over the course of our
“careers” seems to be denying us the opportunity to
have what could be the most plausible role of all:
serving as bridges between and among all of our various
factions and fictions.
For me, what it seems to come down to is that
because I have done such a good job of “passing,”
few accept I am eligible to bear the mantle of being
a labeled person. It’s true that I have not faced the
public denigration and stigma of being forced to
carry a mental illness label outside of trying to get
in-patient services from recalcitrant insurance companies
and avoid incarceration. My denigration and
oppression was primarily private and I’ve spent many
angry years and dollars dealing with that legacy. Yet,
my current experience seems to tell me that this lack
of public service as a publicly labeled person is somehow
a key factor in the admission criteria.
The campaigns against my demons were shared
only with closest friends and family until now. I,
like FDR, had that choice. I’m grateful that I was
able to keep my campaign private because it afforded
me sorely needed and highly cherished energy, even
though many perceive me to be a somewhat overactive-
type person (another form of “passing”). The
energy I was able to carefully garner was put to use
in staying alive and developing the coping mechanisms
I needed to fend off the demons, the side effects,
the after effects, and the on-going fallout that
physical, sexual, and emotional abuse leaves in its
wake. Plainly put, I was able to divert the energy I
gained from not having to fight the fallout that comes
with being a publicly stigmatized and oppressed person
in our society to helping to fight the oppression
of others.
My Own Big Picture of Our Real Division
As an advocate/c/s/x/r/whatever whose most visible
work has been within the “developmental disabilities”
community, I fret a great deal about the
inequity of the separate and disparate support systems
that continue to be promoted for us, by others,
and amongst ourselves. Whenever I make the
time I need to go to the mental health drop-in center
to get “centered,” I sit and wonder about a lot of
things that usually have nothing to do with my own
recovery. I’ve met a lot of wonderful people there
and admire their resilience at dealing their own human
needs and aspirations in a society that de-values
and seems increasingly willing to toss some
people away. I reflect on the amazing wisdom of
having 50 or so mental health consumers control
one aspect of their own destiny and recovery with
the amount of money that would currently only
cover the cost of keeping one person in Tennessee in
a state-run ICF/MR for less than three months.
In my fretting, my stream of consciousness invariably
bring me back to what I believe to be the
most divisive element within the disability community
even more so than things than like who/what
system(s) are for and how they carry out their work;
poverty. It is poverty that frequently decides who
among us gets labeled. Poverty typically dictates
where we will fall within our own disability caste
system. It dictates whether someone will have the
opportunity to speak for themselves and whether
their wishes and decisions will be respected and honored.
Finally, poverty factors into who will be
anointed to speak for us and ultimately, whether they
will choose to be accountable to us.
Most experts agree that poverty leaves its own
lifelong stamp on ones soul that is hard to erase.
Growing up with a single mother of seven children
who was in denial about her own mental illness
meant that I spent a lot of up close and personal
time with poverty. I also spent some time voluntarily
poor due to some good decisions as well as some
bad.
Inasmuch as I’ve waded into a new personal era
of being more personally “open and sharing,” I’ve
also spent some time talking with close friends and
colleagues who shared the experience of poverty at
one point or another in their lives. We acknowledge
readily that we didn’t transform ourselves into
solid middle class citizens on our own. Along each
step of our journey we had people who lent a hand,
a dollar, a shoulder, and a real connection to reach
out to. However, each of us acknowledges that we
continue to look over our shoulders for reasons the
experts don’t typically describe or suspect. Many of
us who were assisted in rising up out of poverty by
others don’t look over our shoulders for fear that poverty
will again overtake us. We look over our shoulders
for another reason entirely: a sense of social reciprocity.
The Challenge: Walking the Walk with No Roadmap
I find myself now walking a walk with no
roadmap in hand. In reinventing myself and launching
myself into another career cycle, I’ve decided that
an integral part of who I am can no longer be left
behind at the door. In the process, I am struggling
to integrate what I’ve learned from moving toward
healing myself to approaches that could be taken
toward healing the way I do work in collaboration
with others.
Burton Blatt, a man who was deservedly revered,
warned us in 19819 about the “bureaucratization” of
the values that we seek to promote and embrace in
the work we do. His effort to sound the alarm about
the impact of the advancing march of rules and regulations
as an effort to keep people safe, and the programs
that served them humane, was like most of
the things Burt did—prophetic. Burt’s prophecies
have played out as he foresaw—rules and regulation
were developed to codify such things as normalization,
social role valorization, and mainstreaming, and
continue to be developed for other “best practices”
that have emerged since. Quality assurance efforts
continue to try to get at and transform into a checklist
those values that define how people with disabilities,
families and many practitioners wanted
people with disabilities to be treated. However, like
Burt predicted, they will never be a substitute for
walking the walk.
I continue to steadfastly believe that it is down
in the “roots” where the mystical seeds of social transformation
are nurtured and planted. Moreover, I
continue to believe that social movements are not
an artifact of the “sixties.” People have been joining
together to change their social condition for thousands
of years. Following the bubonic plague in the
13th century, the serfs who survived banded together
to take advantage of the depleted labor force to become
“freemen!” Unknowingly, they helped to create
the map that led to the Renaissance and its legacy
of our current euro-cultural context.
With no map in hand, it is very hard to find and
get to places where the practice of social change itself
is being transformed. It seems almost serendipitous
when I encounter other people who are wandering
around with no map in hand as well. I instantly
want to install a sign-post and am easily distracted
with the self-assumed responsibility of being
a cartographer and reporter rather than letting myself
just enjoy the landscape. Even so, I also find
myself frequently slipping the old map out my pocket
and wishing that a new print run rather than a major
new expedition would serve to help us all move
forward.
Like all who work at recovery, questions and situations
that challenge my resolve to be different and
do things differently lay around every corner. Our
codified values and quality assurance checklists have
not brought us collective equality, justice, or liberation.
The sirens of our individualistic culture lure
us to the rocks of separateness and isolation. The
current ways of confronting the abuse(s) of power
(personal and systemic) are rearticulated and reinforced
as the only approach that those who are in
need of confrontation can understand. I sit in my
little home office and can’t help wondering, “How
do we know this to be true and what will we stand
to both gain and lose if we try another way?”
Endnote and Invitation
Collective thought and action by a group of
people who seek to transform the manner in which
their specific and unique needs and interests both
serve and support society does require some form of
an accepted identity, at least initially. This brings
me back to the issues of labeling and “passing”. Perhaps
an additional mystical seed needs to be planted
in the interest of transforming our organizational
practice. Although the recognition and acceptance
or rejection of one’s own labeled identity used to be
central to the beginning of the process of liberation,
maybe on the new road map anyone who walks the
walk of sharing his or her own personal authenticity
has equal legitimacy.
A process based on respect, I think would be as
good as any place to start. But more so, I believe we
must build a collective process in which we all listen
to one another and all voices that seek to help us
restore and reclaim our humanity are welcome. In
such a place, I might enter the room holding my
new (or old) label sign but rapidly be able to place it
on a bonfire built in celebration of our mutual gifts.
Writing this all down has given me a little more
insight into my personal dilemma about accepting
those labels and why I feel so enticed into doing so
when I’ve spent a whole career fighting them. What
I do know is that we all have to move past this categorization
and classification thing somehow. New
experts are bound to turn up to tell us how. But for
now, I’m tired of “passing”. I’m looking for a place
to hold the coming out party to celebrate my differences.
Maybe if FDR had had friends like the folks
over at Our Place, he would have gotten into his
chair and rolled right on over, in clear view of any
and all to see.
Ruthie-Marie Beckwith, Ph.D. is a disability
rights advocate who resides in Tennessee. She currently
helps individuals and families create
microboards, a single person provider based on the
principles of self-determination.
Endnotes
1 From Beckwith, R. (2003). The Arlington poems: The struggle
for the lives in a state-run institution. Columbus: OH, Pudding
House Publications.
2 National self-advocacy organization
3 People First language insists that the person be identified first
and then, only if necessary, their disability.
4 Post traumatic stress disorder
5 Dissociative disorder, not otherwise specified
6 Self-injurious behavior
7 Building recovery of individual dreams & goals through education
& support, a consumer run education program on mental
health recovery, sponsored by the Tennessee Mental Health Association,
the Tennessee Alliance for the Mentally Ill, and the
Tennessee Department of Mental Health and Mental Retardation.
8 Consumer/survivor/ex-patient/recovery
9 Blatt, B. (1981). In and out of mental retardation: Essays on
educability, disability, and human policy. Austin, TX: PRO-ED.
© 2004 Ruthie-Marie Beckwith, Ph.D.
