[Viva] Calling for Feedback from Members

Wed Jun 29 11:47:52 PDT 2011

Hi everyone,
It has been on my mind and I want to respond to a couple of the emails sent
out recently by Denise and Kath regarding the draft letter to PWN.  I am not
speaking for the working group, this is my own perspective.

First of all, thanks Denise for the strong vote of confidence for ViVA. I
think maybe you are right that it is time we should become a registered
non-profit organization and I would be interested in hearing other viva
women's opinions on that. Of course that means we will have to have more
than our current funding, which is ..... zero.

I also want to thank you for sharing your story with us, you have encouraged
me to relate *some* of my experience with PWN.

I too was on the board of PWN in 2006-2007, for a 2 year term, during which
time I put in a lot of volunteer time. If you count my travel time (and
recovery time) it was huge and it was lost wages for me and my family! One
of the things that I did while I was on the board was start an "advisory
committee" of positive women, PWN wanted the committee to have 3 to 5 +women
(cherry picked).  Anyways, in my attempt to get representation of our
diverse community the "advisory committee" soon grew to 12 women.  Contrary
to what I was hearing at PWN, I soon found that there were LOTS of positive
women who want to have a say in their lives and the organizations that
represent them. That is a good thing and should have been supported and
encouraged within PWN. I ran into trouble working with the PWN staff and
Executive Director when I insisted that we did NOT need a staff member at
our meetings. That made them very uncomfortable. For over a year we tried to
work with PWN, while maintaining some autonomy, because the obvious place
for positive women to be was at the Positive Women's Network.

Here I want to mention that after attending 2 International AIDS
Conferences, where I met women living with HIV from all over the world, I
started realizing that *everywhere* the networks of positive women (India,
Argentina, Venezuela, USA, Uganda, UK, Russia, Italy, Mexico etc.) are all
member driven organizations and that our own PWN here in BC is an
exception to this. It didn't start out this way but this is the way it is
now.

And thus, out of a desire for an unsupervised peer community, by and for
positive women, what started as an "advisory committee" grew and transformed
into what is now ViVA.  My motivation is and always has been to better the
lives of positive women through mutual empowerment. From what viva women
say, I see there is a strong appreciation of what we have created. I know it
needs improvement and that it is not perfect but I do feel that we have a
strong community and we are trying to run it as a collective where the
working group is the hub of the group and all the members can have a say,
not a top down organization. The ViVA listserv (thanks to Tami) is a great
way for +women to stay connected from their own homes and is more secure
than a group email list.

 The ViVA working group members are not elected, it is all volunteer, *
anyone *from ViVA is welcome to join in at anytime. We will be meeting face
to face at the upcoming Positive Gathering in November, our only chance to
bring a lot of us together and a good time to get involved.

 In my role as a ViVA working group member I feel that we have responded to
the letter from PWN in a way that is appropriate with the feedback we
received from the ViVA membership.
The working group is aware that we cannot speak for all ViVA members. What
we have tried to do was to give everyone who wanted to weigh in on this, an
opportunity to do so. We had feedback from about 25% of our members and in
our draft we tried to reflect these points of view. I am also well aware
that many of our members are also PWN members and receive some kind of
support or services from them and prefer to stay neutral. I understand and
respect everyone's choices.

ViVA is moving forward by being an awesome online community of amazing
positive women. The important thing is that we continue to treat each other
with the respect that we all deserve and that ViVA remains inclusive
of ALL women
living with HIV.
Thanks for listening.
with love,
Margarite

On Sun, Jun 12, 2011 at 9:01 PM, Denise Becker <dbecker106 at gmail.com> wrote:

> First, in answer to Kath, who asked me... I was at the Canadian HIV/AIDS
> Legal Network meeting because I applied for a scholarship.  I am a member of
> the Legal Network and used to be on their Board but I found that the Legal
> expertise needed for this Board and the knowledge of street involved women
> meant I was out of my league and so after two years I did not apply again.
>  Now that social media is more an issue, I felt that it was a good time for
> me to go to the meeting.
>
> On to the Draft Letter...
>
> I have stayed out of this because I am a Board member of Positive Living
> BC.  Since Kath has discussed the issue and she used to be on the Board of
> PWN then I think it is OK for me to talk about it, with the clear
> understanding that I am talking from a place of history with PWN and NOT
> from the viewpoint of Positive Living BC since I am not authorized to speak
> for them.  In fact, clearly, the only people who can speak on behalf of
> Positive Living BC are the Chair and Adam, the Communications Director (upon
> direction of the Chair).
>
> OK, so with that over, I will put in my two cents worth (which will seem
> like 99 cents if you read of all of this!).
>
> There have been good times for me and there have been bad times for me with
> PWN.
>
> Undoubtedly, the good times were the Retreats and being able to meet so
> many women at a time in my life when I needed to connect.  During these
> times, I met many women who were strong and courageous and they inspired me.
>  Unfortunately, some have now passed away but I have stayed friends with
> many.  The Retreats had workshops and ways of talking about what had
> happened to all of us.
>
> In addition, PWN was the group that gave me a chance to get out there and
> speak to people about living with this disease and they did it in a very
> careful way, which respected me and teamed me up with a doctor who took
> questions.  Quite frankly, it changed my life, mostly for the better but in
> some ways for the worse because I felt a little locked into the trauma of my
> diagnosis but that was totally my issue and I don't blame PWN for that at
> all.
>
> Those two things that helped me enormously.  At a conference I met BCPWA
> and realized they were a big organization with positive people and I was a
> little intimidated by them - they seemed so radical at the time!
>
> It became increasingly clear to me that PWN was mentioned by the staff as a
> "safe" space and that I felt more and more like I was not being empowered
> but was in a position of being allowed by the staff to go to conferences or
> to speaking engagements.  I felt that positive people were being told what
> they could and could not do.
>
> I was on the Board of PWN with four other positive women, three who have
> now passed away.  When we were elected we had to go through a process which
> decided if we were suitable candidates.  This disturbed me because I felt
> the membership should have just voted according to my bio on whether I was
> suitable and that I should not be hand-picked by the staff.
>
> Shortly after I became a Board member, there were cut backs in staff and
> money was tight.  The positive women on the Board were very concerned about
> the services which would be cut to members and so we decided to look at the
> financial statements, which seemed heavily weighted in favour of staff
> salaries.  At that point, we asked to see salaries of each staff member.  We
> were well aware that the Executive Director was earning a very high salary
> for the hours worked compared to similar positions in the rest of the
> country.  However, on asking for these salaries we were told that we didn't
> understand the issue and that we didn't have enough history with the
> organization.  The staff even talked about setting up a union and we
> realized that our positions were merely "rubber stamp" positions of anything
> the staff wanted to do.  We all immediately resigned and had nothing more to
> do with PWN.
>
> After this, I founded the Hummingbird Kids Society.  It deeply disturbed me
> that at conferences PWN was claiming to be a society for women *and
> children *and yet their mandate was clearly for women alone.  I publicly
> criticized this at conferences and at funding meetings and eventually
> Hummingbirds got recognized by other organizations that it did, in fact,
> represent children.
>
> I then heard more and more from PWN that "positive women" didn't want to
> come out and had child care issues and then, of course.. there were the
> children who needed to be protected.
>
> For those of you who have read this far, thanks for staying with me up
> until now!
>
> OK, so I decided to put that behind me and be friends with Marcie et al.
>  As time went on I heard of more positive women having problems with PWN but
> I also saw Kath, whom I respect immensely, working with PWN.  I decided
> eventually to join Positive Living BC (or BCPWA as it was then) and I was
> amazed at what empowerment really meant.  I was given direct decision
> making, I was working WITH staff and the whole Board was HIV+.  They found
> ways for me to participate and it was more a case of me having to hold back
> from participating too much.  I finally felt like I had control over what
> went on in my life and that we were making a big difference in politics
> rather than whining that no one cared.  There were some difficult Boards to
> sit on but I really respected the incredible intelligence and foracity of
> the people I was with on BCPWA Board.  This continues to this day and I find
> the Board and staff really amazing, incredibly supportive and FUN!!!!
>
> When the Draft letter came out, I have to admit that I was mad.  I felt
> that if VIVA went back to being part of PWN then I would have to leave VIVA.
>  I had already left PWN and no longer wanted to be counted as a member.
>  However, I realized this was not about me, it was about the members of VIVA
> and so I decided that any letter by a working group that was in Draft form
> and put to the members of VIVA for comment was very democratic and THAT was
> something that PWN had never been to me.  It was at that point that I
> realized that VIVA itself had become an amazing organization that really
> didn't need any other organization to support it, it was going to do it all
> by itself and could get funding for being what it was - a voice for women
> that was democratic and empowering because it cared what the women thought
> who were its members.
>
> So, finally, it is my wish that VIVA now continues as an organization that
> has finally come of age and is fine just by itself and I think we should go
> for charitable status and carry on as the proud, strong women that we are!
>
> Denise
>
>
> On Sun, Jun 12, 2011 at 8:10 PM, heidi safford <hsafford at yahoo.com> wrote:
>
>> well said Kath :)
>>
>>  ------------------------------
>> *From:* Kath Webster <kathwebster at shaw.ca>
>> *To:* viva at lists.resist.ca
>> *Sent:* Sun, June 12, 2011 2:14:54 PM
>> *Subject:* Re: [Viva] Calling for Feedback from Members
>>
>>  Hi there working group,
>>
>>
>>
>> I appreciate that your letter is honest and that you are expressing some
>> openness to communication with PWN.  I also appreciate how tricky it is for
>>  the working group to navigate these issues.
>>
>>
>>
>> I was glad to see that you are speaking as  the working group and that you
>> have signed it as such.  Since ViVa is an informal group (which is what
>> makes Viva so great!) and the working group are not ‘elected’, it is an
>> important to clarify who you are speaking for which you have done. i.e you
>> are not attempting to speak for *all* Viva members.   Also, it’s great to
>> put a call out for  our feedback too as long as it’s understood that lack of
>> feedback doesn’t necessarily mean it is endorsed by all members.   That
>> said, it’s  great that you provide the opportunity for voices to be heard.
>>
>>
>>
>> My sense is that out of the 40 plus members of Viva it is a minority of us
>> who are attached one way or another to the PWN “issue”.  For most there is
>> likely no ‘issue’ and they are neutral.   That is just my sense... and
>> that’s why we mostly hear from the same people on this issue, including me!
>>
>>
>>
>>
>> I would urge the working group to ponder this question:  ‘what
>> specifically do you need to move forward with these issues or *do* you
>> even want to move forward with these issues?”  (not asking for the actual
>> answers ...just a question to ponder).
>>
>>
>>
>> No group/organization/company is perfect and that’s because groups etc are
>> made up of human beings and we are all far from perfect!  Individuals and
>> groups are “WORKS IN PROGRESS” .    Of course it is necessary to give
>> feedback and ask for change when things aren’t working the way you would
>> like.  The more specific and concrete you can be in asking for changes , the
>> better and more effective it will be.  If we as people and as organizations
>> are not growing and changing , we are stagnating.  Three cheers for growth
>> and change; individually and collectively.
>>
>>
>>
>> Thanks for the contributions of all to the Viva e list.
>>
>> Wishing a relaxing Sunday to all,
>>
>> Kath
>>
>>
>>
>>
>>
>>
>>
>> *From:* viva-bounces at lists.resist.ca [mailto:viva-bounces at lists.resist.ca]
>> *On Behalf Of *VIVA Working Group
>> *Sent:* June-10-11 8:01 PM
>> *To:* ViVA
>> *Subject:* [Viva] Calling for Feedback from Members
>>
>>
>>
>> Hi gals,
>>
>> After consultation with the ViVA membership, the ViVA Working Group has
>> put together this draft letter to send to Marcie Summers at PWN.
>> We would like the response to reflect the opinion of of ViVA women,
>> therefore please let us know if this draft is acceptable. You can do this by
>> clicking REPLY to this email, sending a separate email to
>> vivawomen at gmail.com or if you prefer call Margarite toll free 1 866 482
>> 3445
>> Please reply by Sunday evening.
>> Thank you
>>
>>
>>
>>
>>
>>
>>
>> Dear Marcie Summers,
>>
>>
>>
>> ViVA would like to thank you and acknowledge the receipt of your
>> invitation for 1 or 2 members to attend a PWN staff meeting for “information
>> sharing”. We welcome the potential of future communications.
>>
>>
>>
>> Many women in Viva have informed us of their concerns regarding working
>> with PWN, so it is important for us to gather more information about such a
>> meeting before agreeing to it. Therefore we would like to see an agenda and
>> know what “information sharing” looks like to you.  ViVA has made efforts in
>> the past to create a reciprocal relationship with PWN and we felt this
>> involvement was discouraged. Given the nature of past experiences, we would
>> like to know what, if anything, would be *new *and to our *mutual *
>> benefit.
>>
>>
>>
>> Viva is a unique group of women who have an understanding and appreciation
>> of what it is to live with HIV. We have been in existence 4 years and our
>> membership is growing steadily. This is due, in part, to the large numbers
>> of women living with HIV who have felt devalued, alienated and/or have not
>> had the kind of support they were looking for through their experiences with
>> PWN.  It is important to bring this up, since over the years many women
>> living with HIV have experienced marginalization, and we see it as a recurring
>> pattern.
>>
>>
>>
>> The ViVA working group agrees that in order for talks to begin between PWN
>> and ViVA it would first be necessary to acknowledge our shared history and
>> take steps towards reconciliation. This email is being copied to the above
>> addresses because we believe it is time for transparency.
>>
>>
>>
>> We appreciate you contacting us and sincerely hope that you will embrace
>> this opportunity to begin honest discussions. We look forward to your reply.
>>
>>
>>
>> Thank you,
>>
>>
>>
>> Funke Ilumoka
>>
>> Alexandria Keating
>>
>> Margarite Sanchez
>>
>> Tami Starlight
>>
>>
>>
>>
>>
>> VIVA Working Group
>>
>> vivawomen at gmail.com
>>
>>
>>
>>
>>  ------------------------------
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>>
>
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