The Common Factor, no. 8

*6

The Common Factor

issue 8

-omen-r

Social Work? Or: In Defense of the Old Order
by Corey S. Dubin

WHAT IS THE role of social workers
in the hemophilia community? What
are the boundaries that delineate
good support and advocacy from paternalism and interference?
Why are so many social workers
that are connected to the hemophilia
community going to such great
lengths to defend the old order, using our anger as the new method to
keep us down?
With increasing regularity we
hear things like, "Isn't he suffering
from dementia?," or "You know she
just doesn't handle her anger well."
Anger and dementia are the new currency for delegitimatizing those in
the community demanding to know
the truth about how and why so
many of us were infected. In years
past we heard such statements as,
"That patient is too independent for
his own good," "He doesn't take direction from the 'staff' very wellalways questioning and challenging
and asking for alternative opinions."
One of the primary responsibilities of social workers is to validate
the feelings of the client, not to find
ways to invalidate the individual. Repeatedly we find social workers in
our community projecting their own
inability to cope with the devastations of AIDS by invalidating feelings of anger and abandonment.
The Old Model
The Hemophilia Treatment Center Comprehensive Care Model also
raises serious questions about the
role of social work. As part of the
medical treatment center team, the
social worker's first responsibility is
to the medical staff and not the client. Ultimately the social worker
must answer to the medical staff.
This creates a difficult situation for

the social worker and an even worse
situation for the client. Over the
years I have seen a number of social
workers resign from treatment centers because what they believed was
in the best interest of the client ran
counter to the opinions and actions
of the medical staff.
Being a social worker in the hemophilia community should not be
about power and privilege over those
you are employed to work with.
When providing support and advocacy becomes control, bad things tend
to occur: staff members become invested with sustaining and protecting
a fundamentally corrupt system of
power and control. For many of us,
this is occurring all too often.
Empowerment
COTT's peer-led advocacy and
support network is designed to

implement community-based programs personed by people with hemophilia and their families. This, we
believe, is the only way to overturn
a structure that is in opposition to
our interests.
Empowerment can be a long and
arduous process, but it is a totally
necessary one nonetheless.
We are not the ones trapped in
denial. We live the reality of infection each and every day. No running and hiding here. No denying
that decisions based on profit were
made and that those decisions resulted in the infection of thousands.
Seeking social and economic justice is not the ravings of the demented or anger run awry, it is the
conscious movement of this community in the pursuit of justice for those
who have crossed into the spirit
world as well as our families.
The old order is decaying. The
power relationships are changing
and we have no intention of returning to the shadows and going quietly-this I know from the bottom
of my heart. Those working with
this community must embrace and
support the new vision or step aside
as the train is rolling.
One model leads to disem
Reflections on Able-Bodied Advocacy
They came...They advocated...and when it was over nothing had changed.
We remained as disempowered as ever.
Those liberal minded...Three piece suited...Advocates.
They're involved...They care... They're always there.
The Advocates...
Only they can be objective enough to know just what is right for us.
They're always there.
As you know... we sickies...hemos... cripples
And other assorted (sordid) dis-abled poor folks just can't be there.
So...Three cheers for the Advocates...
Where would we be without those...Liberal minded...Well intentioned...
And, of course, patronizing souls...Yes...Three cheers for the Advocates.

- C.S.D.