Education Series
Number 1
March 1991
Arlene Ford helped to start one of the first methadone advocacy groups at Nassau County Medical Center. This article was written for the COMPA Newsletter for distribution at the National Methadone Conference.
Methadone has allowed me to salvage my life. In May of 1988, following a
fourth relapse, my twenty year marriage, my relationships with my sons, and
indeed my very existence was under attack by addiction. Methadone maintenance
treatment has granted me the chance to heal myself while repairing shattered
relationships. My husband and I are now able to renew our love. My children can
again rely upon me, and I have returned to work. Hippocrates said, “Healing
is a matter of time, but it is also a matter of opportunity.” The
program has given me that opportunity. The siege is over and the healing has
begun.
I have been asked to share some thoughts and concerns to many successful
methadone maintenance patients, specifically as they relate to that all
important decision of whether it’s time to advocate for oneself…determining
when it is no longer sufficient nor appropriate for Program Administrators and
staff members to speak for you…determining when, as a patient, one is capable
of coming to terms with the fact that a significant part of recovery is both
disclosing who you are and what your require to continue, even when that
recovery is methadone maintenance.
Partially because substance abuse professionals within the methadone
maintenance field are so very aware of the bigotry confronting the methadone
patient, they tend to shield the patient form public scrutiny. Counselors,
nurses and other staff members often feel that if they speak on behalf of the
methadone patient, indeed if they alleviate the need for the patient to advocate
for himself, they then can protect the recovering addict from the invasiveness
of outside prejudice. Although selfless in nature, this approach often can
extend longer than is healthy for many of us who are well along into our
recoveries; or conversely for those who are still struggling with recovery but
require a sense of self worth to continue in the day to day work of abstinence.
By understanding or sensing that it’s “okay to be on methadone,” we as
recovering addicts, regardless of our stage in sobriety, can in turn send a
message through our actions that we are healthy individuals ready to become
functioning, contributing citizens.
On a purely selfish level, there are clearly some methadone patients who, if
they “come out of the closet” would only serve to further perpetuate
harm to an already negative public myth that surrounds methadone clinics and
their patients. It is however, the other segment of the patient population that
should be addressed and encouraged to take an active role in the consumerism of
recovery, particularly as it relates to self-advocacy within their own clinics
and with local and state officials. For clearly, when patients are invested in
their own treatment, opting responsibility for their own recovery, the results
are all the more positive.
Occasionally, in the development of a working self-advocacy program, staff
members may feel the impulse to “put the lid on” some seemingly chancy
activity because of inherent risk, threat or embarrassment to the Program. This
instinct hopefully will be diminished by the knowledge that an essential part of
any growth process is the opportunity to make mistakes, benefit from those
errors in judgement and go forward. Because methadone patients have relatively
low levels of self-confidence and esteem, it may be necessary for program staff
members to signal their confidence in and acceptance of the stabilized methadone
patient as an individual capable of coming to terms with the issues and stresses
of self disclosure and advocacy. Initially, even successful patients may be
reluctant to come forward and spread the word of their success on methadone, but
with repeated clinic encouragement and preparation, a core group will soon form
and attract other stable, sober patients.
As a patient at the Substance Alternative Clinic (SAC) in Nassau County, I
have been fortunate to witness and be involved in the growth of our own patient
advocacy activities, Within the last year, this group has undertaken numerous
endeavors to involve methadone patients at SAC more actively in treatment
policy, programming and planning, in public education and in healthy alternative
activities in their clinics and communities that not only benefit the individual
patients, but their familiar, communities and all methadone patients. Within the
clinic, for example, a Patient Advisory Committee was established to work with
the SAC Program Director on matters of concern to the patient, community and
staff. Suggestion boxes prominently displayed in the units serve as conduits for
patient comments and suggestions that are in turn discussed by
patient-representatives and the Director. As a result, a myriad of changes have
been effected ranging from those of patient’s basic dignity to matters of
patient convenience. Additionally, selected patients serve with staff to revise
clinic policy. The involvement of their peers in administrative policy changes
is utilized to allay patient concerns that clinic procedures not be mandated
unilaterally without the aid of their fellow patients’ collaboration. The
anticipated result is an increase in patient acceptance and compliance with
clinic regulations. And, a clinic newsletter, now published monthly by patients,
reports on clinic activities and serves as an important forum for problems and
issues. The newsletter has significantly enhanced communication and
understanding by patients of all aspects of the clinic’s programs.
Beyond the clinic sphere, public advocacy and education has been a priority.
Following the highly slanted “investigative” piece appearing in
Newsday this summer, patients wrote letters of protest to editorial staff, and
various SAC patient groups wrote letters of concern and protest to public
officials regarding ongoing GAO audits of methadone clinics. An important item
of note is that several active members have begun, in their strong belief in the
positive powers of methadone maintenance, to utilize both their first and last
names when identifying themselves as methadone patients – indicative that
anonymity is secondary in importance to crucial matters of advocacy.
In August 1989, Nassau County’s newly appointed Director of Drug
Enforcement/Information Council attended the Friday Night Peer Support Group at
SAC as an honored guest and speaker. The Group was able to alert the Director to
the critical need for the education of the county’s judicial and penal system
officials in order to debunk the myths and legends that have continually
surrounded mthadone maintenance treatment programs. By meeting’s end, an empathy
and deeper understanding by the Drug Enforcement Director was perceived which
further reinforced the self-advocacy theorem as well as advanced the patients’
self esteem and confidence, providing the impetus to go further.
Additional SAC activities have been initiated and while not specifically
advocacy oriented, have directly linked many patients to healthy,
“straight” activities and relationships – in many cases for the first
time in years. In May, the SAC Mother’s Group sponsored the first in a series of
clinic bake sales to benefit clinic children’s activities. Initiated and run
entirely by volunteer patients, the success of the sale sent a clear message
that many patients were no longer solely content to just report to their clinic
for medication, and that involvement in clinic events and advocacy was
involvement in one’s own recovery. October marked the opening of a patient-run
and patient-donated SAC Clothing Swap shop to Supply any patient or family
member in need with used presentable warm garments.
There is little question that it may initially require a “leap of
faith” for clinic administrators and staffers to promote and encourage
patient self advocacy. Staff may be discomforted at first, unsure that the
patients may say something out of line, that some power has been transferred or
lost, and roles and identities blurred. Coupled with the need to “let
go” staff must also be alert to patient disappointments and
discouragements. Patients may tend, in their new found zeal, to take on
everything and everybody, in an attempt to prove that their recovery is here to
stay as well as powerful. But clearly the risks bring rewards. Patients will
unite, networking together to both protect their program as well as expand their
horizons into the community with the message that methadone maintenance is an
important, positive recovery tool.
Notably, with entrance into public activism, comes the patient’s greater
awareness of himself as an enfranchised individual; someone with the rights and
power of the voting booth. With the realization comes power…power to effect
change as a member of a constituency that verbalizes how they wish the
localities’ scarce funds expended in the arena of drug addiction…power to
remove officials from office if they are not responsive to the requirements of
the patient activist.
Methadone maintenance treatment, always controversial, has recently attracted
another spate of unwarranted, negative attention. Federal and State
audit-investigations abound…seemingly convinced from their inception that
methadone treatment is equivalent to the continuation of an addict’s active
addiction, not necessarily supportive of abstinence nor a “true”
recovery program. Given the less than enthusiastic reception of methadone as a
treatment modality by elected officials and the misperceptions of the general
populace, continuing existence and growth of patient self-advocacy groups is
essential. Inherent in the validation of methadone treatment as a recovery tool
is communication and cohesiveness between clinic staff and stabilized patients
who are prepared to be advocates. It’s time to take the burden off the shoulders
of clinic personnel and share it with those who are the only ones in a position
to speak personally of the struggle as well as the joys of methadone maintenance
treatment and recovery.
Notes
Reprinted from the COMPA Newsletter Fall 1989/Winter 1990 (2): 6-8. Committee of Methadone Program Administrators COMPA, 250 Fifth Avenue, Suite 210, New York, NY 10001.
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