Stigma (STIG-ma): noun {From the Latin for "mark" or
"brand"}
- a scar left by a hot iron
- a mark of shame or discredit
- an identifying mark or characteristic, i.e.: a specific diagnostic sign of a disease
Everyone touched positively by methadone maintenance treatment is familiar
with stigmatization. Patients, family members, friends, staff- we have all
experienced the consequences of being branded by the myths and misunderstandings
which surround our me dication. From callous and inappropriate treatment by
medical professionals to discrimination in the workplace, the stigma attached to
methadone and methadone maintenance touches every aspect of our lives. All of us
have recognized the stigma. We are aware that the treatment that has meant
rebirth for us or our loved ones means something very different to the public.
Many of us have learned to adjust to the stigma. Most keep this part of our
lives hidden from all but a few. Tragically, too many of us have come to accept
the stigma. We brand ourselves with this mark of shame, accepting society's
labels as our own. And believing ourselves to be less worthy than other people,
we sometimes act accordingly.
Who is responsible for the stigmatization of methadone maintenance patients?
Is it the tabloid press with their sensationalistic stories? Is it elements
among the government agencies and anti-drug organizations who have an interest
in the status quo? I s it the proponents of abstinence-oriented treatments who
fear competition from a treatment which, unlike their own, can document a
substantial rate of success? Clearly each of these groups share in the blame,
but to find some of those most responsible fo r the current state of things,
often we need look no further than the administrative offices of our local MMTP.
For tragically, some of the biggest perpetrators of this stigmatization are
the very providers of treatment themselves!
How do many providers stigmatize the very treatment they provide and the
patients to whom they provide it?? They do so by constantly telling patients,
public, and staff exactly what they think of the medication they dispense, the
patients to whom they dispense it, and the scientific basis of their program.
Every time certain providers ignore the proven protocols of methadone
maintenance treatment and deny patients adequate dosages their message is clear:
"This stuff is bad for you. The less of it you take the better." Every
time a provider refers a patient to a blatantly anti-methadone twelve-step
meeting a message is sent: "Their opinion of you and your treatment is
valid." Every time a program through its actions dismisses thirty years of
solid resea rch they literally shout out: "Science does not matter, the
proper tools are unnecessary...we know what you need!"
Nowhere are such stigmatizing messages more loudly proclaimed or the
consequences of the demedicalization of methadone treatment more clearly evident
than in the staffing of many programs. When a program hires a Freudian social
worker ignorant of the basics of neuropharmacology, the message they are sending
their patients is one of indifference. When they hire an ex-heroin addict
graduate of an abstinence oriented modality over an equally qualified methadone
maintenance patient the message is one of contempt. The halls of such programs
echo with psychobabble; a hodgepodge of catch phrases and platitudes fill the
ears of the vulnerable. Patients desperate for an understanding of the illness
they suffer and relief from the stigma they already bear find neither readily
available. By maintaining a staff either completely ignorant of the
neuropharmacology of the medication or actively opposed to the treatment on
moral or judgmental grounds, these providers confirm and perpetuate their low
opinion of the modality.
These providers speak plainly, and these providers are heard. In a society
already plagued by the myths that perpetuate the stigmatization of methadone
patients, the opinions of such providers carry all the more weight. They are
heard by the counselor who urges stable patients who owe new and productive
lives to methadone to "get off this stuff." They are heard by the
physician who leaves the suffering in agony for want of an adequate dose of
painkillers. They are heard by the judge who denies caring p arents custody,
telling them that they're "not really in treatment". They are heard by
the loved ones who watch with suspicion, convinced that the medication is just a
substitute poison. And they are heard by the patients who think the others must
be righ t, as they find that society's chains have replaced those of the
streets.
We must raise our voices in response. The brand with which the purveyors of
stigma would label us has been forged of lies, myths, and jealousy. The
knowledgeable patient will not be branded; a knowledgeable public will not
accept the branding. By raising our voices in unison we can spread the knowledge
to counter stigma, and it is to the providers of treatment to whom we must first
call. We must demonstrate to those who run such programs that their practices
hurt not only their patients but the modalit y and drug treatment as a whole.
All those who support quality methadone maintenance treatment must understand
that by empowering patients and eradicating ignorance we are empowering the
modality ensuring a bright future for MMT. We must reach out to all within
the community and support those staff members who, despite often overwhelming
obstacles, bring humane and successful treatment to tens of thousands. By
joining with us to promote understanding of the basis of quality methadone
maintenance tr eatment, providers will ensure a brighter future for themselves
and us all.
On a more positive note, all the hard work put in by NAMA's membership and
affiliated organizations has been paying off. Increasingly, NAMA is being
recognized as the premier methadone advocacy organization in the nation. This
was most tangibly demonstrated by the award of a grant to NAMA from The
Lindesmith Center, a drug policy reform organization within George Soros' Open
Society. We wish to express our gratitude to the Lindesmith Center for their
support of NAMA, as well as for the pioneering work they've done in uniting once
isolated elements of the movement in a common struggle to educate the public and
develop innovative approaches to old problems.
As the demand for such innovation continues to grow, NAMA has been busy at
the numerous conferences called to examine the issues. On March 22 we attended
the New York Academy of Medicine's conference, Harm Reduction, Drug Policies
and Practices: International Developments and Domestic Initiatives, where I
spoke on "The Methadone Patient as Consumer". There we met many old
and new friends from across the nation and around the world. Perhaps the most
exciting of the many speakers who addressed the conference was Lindesmith Center
Director Ethan Nadelmann. Ethan's direct and powerful call to action moved the
crowd visibly.
Next came the Strategies For HIV/AIDS Prevention: Research, Practice and
the Media (April 13, 1995) organized by methadone activist Jane Blansfield
and held at Columbia University. I appeared on a panel discussing the importance
of methadone maintenance in reducing the spread and impact of HIV. In light of
the recent upsurge in heroin use in the United States, the importance of
expanding quality methadone maintenance treatment in order to stem the tide of
HIV infection can not be overstated. Beth Israel Medical Center President and
unwavering MMT supporter Dr. Robert Newman also appeared on this panel. His
analogy between the discharge of MMT patients for drug use and the denial of
treatment to tuberculosis patients who "willfully persisted" in
coughing up blood drew cries of recognition and outrage from the attendees.
Given that many programs in the US routinely discharge patients for marijuana
use, we can only hope that more providers would recognize the truth of the
simile, and discontinue th is unethical practice.
Closing out this round of spring conferences was the Northeast Conference:
Drugs, Sex, and Harm Reduction, held at the City University of New York.
NAMA Advisory Board member and friend of patients Chuck Eaton chaired the panel
Substance Abuse Management: Methadone Maintenance. NAMA vice-president Joyce
Woods gave a heartfelt and well-received critique of anti-methadone attitudes
within the harm reduction community with the presentation, The Anti-Methadone
Propaganda in Harm Reduction. Chuck Eaton's Toward Fulfilling the Promise of
Methadone Treatment as Harm Reduction: A Patient-Owned and Operated Treatment
Program presented the development of patient run methadone program cooperatives.
These cooperatives are an exciting new development as they have the potential to
re-invigorate the modality and re-empower the consumers of treatment.
In addition to our appearances at conferences, NAMA is being increasingly
consulted by policy makers and public health officials who are coming to
appreciate the need for accurate information and input from the consumers of MMT.
We were recently invite d by Dr. Henry Blansfield, a noted expert in the fields
of addiction and AIDS, advocate for addicts, member of NAMA's Advisory Board,
and author of the powerful piece "Addictophobia", to consult with the
State of Connecticut's Mental Health and Substance Abuse Division regarding the
formation of patient advocacy groups for the fifteen programs in that state. Our
expertise was also sought on a federal level, when we were contacted by the
Senate Judiciary Committee regarding its upcoming reevaluation of the federal
regulations governing methadone maintenance treatment. This has the potential to
be of crucial importance to MMT, and you can be certain that NAMA will keep you
informed as the hearings near.
In coming months, look forward to NAMA's presence at the Drug Policy
Foundation Conference in Santa Monica (October 18-21, 1995) and at the National
Methadone Conference in Phoenix (November 1-4, 1995). Also on the way is the
article, "Starting a Methadone Advocacy Group", authored by Joycelyn
Sue Woods, Hector V. Maldonado, Luis Torres, Jeffrey Millman, Peter van der
Kloot, and myself. It will be published in the inaugural issue of the Journal of
Maintenance in the Addictions. Dr. J. Thomas Payte is editor of the journal,
which in addition to the usual focus of scientific and professional publications
will present articles on advocacy, stigma, and patients' rights. NAMA is honored
to be considered for publication in this inaugural issue.
Remember, the system will never change until we join
together to make it change. Together we can make a difference!
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This is a super-duper double issue of The Ombudsman and I think that
you'll agree with me that it is the best one yet. With each issue I worry
because I believe that the issue is so good that it just could not be
"topped" and I don't want the next issue to be disappointing. But,
every time you come through with wonderful contributions and The Ombudsman just
gets better and better!
Before I talk about this issue I have an announcement to make -- NAMA has
received funding -- finally we have been recognized for the hard work that all
of us are doing and the importance of our mission. The Drug Policy Foundation
and Lindesmith Center gave NAMA a generous grant. With this moneys we
have been able to extend support to our affiliates, including helping the
organization of about 30 national affiliates/chapters and 9 international
groups.1 We are quickly growing into the stro ng network of patient advocates
that I envisioned seven years ago when NAMA was born. It has been a lot of work
- many late nights burning the midnight oil, but the seeds planted are being to
sprout and most important beginning to have a real impact. Of course, the
amount of work we have ahead of us is tremendous, but it is all beginning to
seem possible.
And, in case you haven't noticed NAMA has a new phone number:
(212)595-NAMA. So give us a call, or send us a FAX.
This issue of The Ombudsman begins with Tony Scro, a long time
methadone advocate. His article,
"Let's Stop The Insanity" introduces the topic of this issue - methaphobia. Scro
concludes with a challenge to "Contract to work together with a wonderful
tool (methadone treatment) to save lives."
The methaphobia theme continues with Ira Sobel's,
"Methaphobia:
Us and Them." I am also very pleased to announce that Ira Sobel has
joined the Newsletter Committee as Editor-at-Large for The Ombudsman. Ira has
written articles that have appeared in the newsletters of several of our
affiliates, including Methadone Awareness. And now he joins us, so expect
to see more of his work.
Continuing with the theme of methaphobia is "
Stigma: The Invisible Barrier," which consists of excerpts from Herman
Joseph's dissertation on
stigma.
Michael Grenga and Spencer Nelson discuss the dramatic changes
that methadone patients in New York have experienced over the past 10-15 years
in
Methadone Treatment in New York. It reflects what has occurred across the US.
And finally Pat Williams has written a very important article,
"The Impact of Managed Care." Each of the 50 states will have their
own version of managed care and it appears that methadone treatment will be
changed drama tically -- and to our detriment. So it is important that we
understand what will be thrust upon us in the next years.
A new feature of The Ombudsman will be the column
"Remember Us." The idea for
the name came from the anonymous article appearing in this issue.
Remember Us gives the oppressed a place to express their feelings and observations.
Our Archivist and Information Specialist, Jeffrey Millman has prepared
for our 'information' "Important Dates to Remember," the bibliography
"Recommended Reading," and "Important Publications & Other
Information." In addition to all this, he has reviewed the video "Fire
in Our House". The video is an excellent educational film on harm reduction
and needle exchange. (And, I've been told that I am in it for a second handing
out needles and methadone advocacy.)
Of course I can't forget the "Methaphobia Crossword Puzzle".
And, finally "In The News" brings The Ombudsman up to date, at
least as the news goes -- covering the news across the nation and internationally.
We all know how painful methaphobia can be. But whether it's methaphobia or
discrimination if we analyze this you will find that ignorance is the driving
force behind those things that we struggle against. The solution is not pointing
fingers because that will not change things. NAMA is dedicated to education
about the Dole-Nyswander Methadone Program for this is the only way to end the
fear, the misinformation and ignorance.
Join us - to end the stigma and prejudice and to reverse the ignorance that
feeds methaphobia.
Together, we can make a difference. Together, we can change the world!
1. NAMA no longer receives support from these organizations.
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John Mordaunt was a tireless advocate of HIV infected drug users. He
was the first HIV+ drug user to be shown on national television in his country,
England. Mordaunt helped to found the British advocacy organization for HIV
infected drug users called Frontliners and was active with the European
Interest Group on Drug Policy, a European umbrella organization for user
groups. In spite of his illness Mordaunt accomplished an incredible amount of
work as a champion for the civil liber ties of drug users. In 1990 upon learning
of NAMA Mordaunt wrote to us with his encouragement and how methadone had given
him the chance to have a normal life. The letter was published in a small
newsletter that proceeded The Ombudsman, called NAMA New s & Notes.
John Mordaunt devoted the last years of his life to making changes, his
energy and presence will be missed.
JW
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Remember Us!
The Writer Asks to Have Their Name Withheld for Fear of Retaliation
Imagine -- a young woman is in the Ladies Room stall, the door is being held
open by a worker whose job it is to observe the woman (any female patient) give
a urine sample. This sample is tested for any drugs that are against the rules
of the methadone clinic.
The young woman is balanced over the toilet in such a way for the attendant
to view the "urine stream." Splash! A small bottle falls out of the
woman's vagina into the toilet. She looks at the worker with tears welling up in
her eyes, "Are you going to tell the doctor?" "Honey, you better
believe I'm gonna tell someone, what do you think you are doing?"
Think of the humiliation, of the desperation for the young woman to even try
such a thing. How many times had the poor suffering woman prepared herself like
this before, as it's the rule for random urine takes! I can't get it out of my
head. It's so pitiful and so typical of the desperate things an addict feels
forced to do. What I see and how I feel, is this woman went to the clinic to get
help. Somehow, somewhere, something must be wrong. If she was getting the right
dose of methadone, if her c ounselor was effective, if programs did not
discharge patients for displaying symptoms of their disease, this would not
happen. Am I right? I feel that I am. If the dose of methadone is adequate then
the addict should not be having "hunger" for a drug. Also, if the dose
is correct then a person would not be able to feel the effect of the illegal
drug. It would be a waste of money. The "high" is gone!
I bring this up as just part of a story, but to show that having one clinic
to treat addicts with methadone (300 patients) is for a city of this size
(Columbus, Ohio) not enough. Also, the human side of this sorry story is the
clinic that is here has been here for more than 15 years and there are just a
few employees that have been with the clinic from the start. One could say
"Bless them for their commitment" or, one could say that they have
become hard and uncaring -- the environment of care has go ne long ago. They
seem to only be counting the days until they can retire and get away from these
disgusting and manipulative patients. It's just an awful situation here in
Columbus. I don't know how to bring help here except like this, in writing to a
nyone that might try to change things here.
This is just one small picture. If anyone can offer ideas or help, there are
many here that would thank you.
Please keep this city in your thoughts. Remember, the patients that are
treated like they are less than human by the clinic, or the active addicts who
never have the chance to be treated badly by the clinic.
Editor's Note: This column, "Remember Us!" will become a
feature of The Ombudsman to provide a vehicle of expression for the many
oppressed patients afraid to speak out. "Remember Us!" will tell their
story.
J.W.
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This past spring TRIPS the project that assists methadone patients to find an
alternative site while traveling was closed. It happened very quickly and as you
would expect created problems immediately. NAMA began receiving calls as early
as March from patients trying to locate a program in the area that they were
traveling to.
Several patients called because their program had inferred that finding a
site was the responsibility of the patient. Other patients called us after being
treated badly by the alternate site program. One patient was treated rudely by
staff while inquiring about the feasibility of be medicated at the program.
Another reported that upon arriving at the alternate site the program did not
live up to their word.
It is far better if you can take your medication with you. Then you will not
have to worry about programs going back on their word and other problems that
patients often encounter. However, if you must be alternate sited you have two
options. You can c all NAMA or the National Clearinghouse for Alcohol and Drug
Information (NCADI). The numbers are listed below.
And, if you have a bad or a good experience at a program that you are
alternate sited to, please let us know as we will probably begin to develop a
data base.
NAMA Number (212) 595-NAMA
NCADI 1-800-SAY-NO-TO(DRUGS)
Free Publications! From Research to Regulations!
JW
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