Date: Wed, 27 Nov 1996 23:58:34 -0500 (EST)
From: jbash223@iglou.com (John Basham)
 
 
                  ROUND PEGS AND SQUARE HOLES
                    REASONABLE ACCOMMODATION
 
Consumers, survivors and expatients (csx's)  are often asked to participate
on boards and committees pertaining to mental health issues.  This means
that anecdotal material can play a valuable part in planning and delivery
of services.  I ask that accommodation now to be allowed and share a couple
of stories to set the tone for this.
 
     The first involves a friend that worked in a consortium to bring
     technology to the third world.  He drove to a hut in Africa on a tractor
     to be offered as a gift.  The owner saw him approach and circled the
     tractor.  This farmer looked up with a hurt and angry expression and told
     my friend that he did not want this machine.  "My farm is too wet and
     small.  I cannot drive it.  I have no money for gasoline.  I  told them I
     wanted a water buffalo so my wife would not have to pull the plow
     anymore."
 
      Another story is when I went to a sponsor and told him I was tired of
     attending meetings of a particular group.. I felt bored by it all and did
     not want to hear anymore of what these people had to say.  He told me that
     I was going there thinking of what was in it for me, and suggested I
     develop instead an attitude o what  I can contribute.   I have been a
     member of that organization for over fourteen years and still attend on a
     regular basis.
 
How do these stories apply to the concept of reasonable accommodation and
csx's on boards and committees?   The first related to their value in
planning and delivery of services.  The second to how can  reasonable
accommodation be used to create an atmosphere where there can be a
willingness to contribute.
 
The concept of  reasonable accommodation for persons with psychiatric
labels is unprecedented.  The adage of the round peg in the square hole may
be applicable.   Those called mentally ill were supposed to be whittled
into fitting into what is considered normal.  This is often referred to as
skill building.  Trying to make csx's like the dominant culture.  If
someone has not learned these so called living skills, reasonable
accommodation can be considered to help empower and allows them to
contribute in a way that is meaningful to all.   The current approach is to
find those that are labeled as "higher functioning"  and have them
participate.  Reasonable accommodation should work so as to allow a planner
to go to a drop-in center, club house or therapeutic rehabilitation center,
pick the first csx  they meet, and make arrangements so that the person
could be involved in a way that is valuable to all.  This current method of
doing things completely overlooks many of the people that receive services.
 
Some standard accommodations for planners to consider are-
 
(1) Transportation- Csx's often do not have the money to afford their own
transportation.  Not all, but many are on some type of disability payments.
Providing transportation or funds to reimburse are important.  If vouchers
are used then they should be available at the meetings.  Make sure that any
reimbursements are made in a timely fashion.  Direct bill expenses whenever
it is possible.  Sometimes friends may transport the members and should be
provided the amenities such as meals or lodging if the meetings last over
night.
 
(2) Liquid refreshment- Many of the medications have a powerful
antihistamine effect and  having drinks available is important.  Small
dishes of hard candy are also a nice touch. These drugs also have a
soporific effect so coffee and sodas are generally the preferred drinks.
 
(3) Alternative formats for written materials- Reading materials can often
be difficult for persons on medications.  Some psychiatric labels are
identified with a marked inability to concentrate for long periods.  Use of
audio materials,  abstracts and highlighting of specific portions can be
helpful.  Include anecdotal material in packets.
 
(4) Stipends- Often others that attend are not paid directly but do receive
remuneration as their attendance is a part of their employment.   Consumers
much of the time are the only unpaid members present.  The amount is often
not nearly as important as the offer.  People certainly are more ready to
contribute if they feel what they have to offer is valued.
 
(5) Mentoring- Calling a person before the meeting to ask if they have any
questions or concerns can be valuable.  Having more experienced members
being willing to help newer ones along may encourage greater involvement.
Taking moments during the breaks or meals to ask questions or offer help
can also be a nice accommodation.  Plans for reimbursement of phone
expenses are important if long distance calls are involved.
 
(6)Breaks- They should be frequent.  A reminder that if cxs's want to leave
the meeting for short unscheduled breaks to feel free to do so. Many such
persons tend to be less time oriented.
 
(7) Jargon- Avoid the use of unfamiliar acronyms and esoteric terminology.
 
(8) Crunching the numbers- Don't lose sight of the fact that csx's are
there to add an experiential view of the process.  This can often be so
different from the empirical approach often favored by the professionals.
Learn to value the anecdotal approach to developing policy.
 
(9) Leadership- Encourage csx's to take leadership in the process by asking
and supporting them to run for officer positions.
 
(10) Attire-  Encourage casual clothing at these meetings.  Csx's often do
not have incomes that allow for business attire..
 
The csx roles and responsibilities
 
How can we as csx's participate in a way that is meaningful to the planners
and providers?   Because this is a relatively new idea, and the impetus is
on us to ask for what accommodations we may seek.  Along with that is a
willingness to negotiate.  One part of this is the idea of
"reasonableness."   Just wanting it doesn't make it reasonable, but we
shouldn't be afraid to ask.  I have seen instances where the request for
accommodation  were accepted like indictments of insensitivity against the
provider.  Avoid getting sucked into that  by offering the request in a way
allows for negotiation.  Do not be afraid to ask questions.  The only dumb
question is the one that goes unasked.  Csx's understanding and
participation in these proceedings should be based upon the questions about
the changes we want in our lives and how will this effect them.
 
The most important part of participation is attendance.  If  we are unable
to make the meeting then the planner should be notified as soon as
possible.  When the time comes that we can't participate regularly then we
should resign in writing and make room for another who can.  Attendance of
members is a crucial standard by which many boards  and committees are
judged.
 
A touchy issue is one of behavior that is recognized as a sign of a
particular diagnosis and at the same time disruptive to planning and
policy.  Is it patronizing to allow it to continue or just making an
accommodation?  Maybe a creative approach can be found that allows for
other than sticking to procedure while not disrupting the meeting
altogether.  Alternative methods of input  might be considered.  Does
having a psychiatric history  give me the license to disrupt a process that
I have agreed to participate?  This kind of behavior can also lead to
having csx's excluded when the most important work is being done.
 
I have seen times that csx's have shared and were listened to attentively
only to have the conversation continue as if nothing had been said.  Many
of these boards and committees sometimes fail to grasp these concepts from
the point of view being offered by those that have been there and lived it.
I try to be patient while also being persistent.
 
Many times affect tends to be a part of the process and some feel
uncomfortable about it.  Often these issues are very much a part of the
lives of those involved with these sessions and feelings can be awakened.
Providing safe and comfortable outlets for the emotions are critical to
involving csx's.
 
Please remember we are all in this together.  That if folks are being
honest and sincere about their contributions and that this is not an
adversarial concept.  Solutions can be found that makes it rewarding for
all that participate.