[governance] Jo-Anne Scott remembered
Nyangkwe Agien Aaron (via governance Mailing List)
governance at lists.riseup.net
Sun Aug 18 08:48:47 EDT 2019
Accept my condolences George and thanks for thé exhaustive tribute. May the
soul of Jo-Anne rest in perfect peace
Agien Nyangkwe
On Sat, 17 Aug 2019, 22:58 Carlos Afonso, <governance at lists.riseup.net>
wrote:
> Dear Paul & all, words fail me on this. Read all the memoirs Enzo,
> Peter, George and others brought to the list with emotion.
>
> I will write Scott right now.
>
> fraternal regards
>
> --c.a.
>
> On 16/08/2019 20:38, Paul Wilson wrote:
> > Thanks for this George.
> >
> > Jo-Anne’s partner, Scott Weikart, write this beautiful, more personal
> > account, of life and her final days. He’s happy to have it shared in her
> > memory, especially for those who struggle in any way with Alzheimer’s.
> >
> > I really hope to see Jo-Anne recognised in ISOC’s Hall of Fame; she was
> > a pioneer.
> >
> > Paul.
> >
> >
> > -------- Forwarded Message --------
> >
> > Subject: (mostly) sad news
> > Date: Tue, 6 Aug 2019 16:19:11 -0700
> > From: Scott Weikart <sweikart at gmail.com>
> >
> > I have (mostly) sad news: Jo-Anne Scott died unexpectedly (on Sunday,
> > July 14, 2019), at home in her own bed, clutching her green stuffed
> > hippo to her neck for comfort. I say "mostly sad", because it was a
> > good time to die: She declined significantly over the previous month,
> > from her severe Alzheimer's disease. She had started sleeping all day
> > long, and then lost the use of her legs (on the few days she didn't
> > sleep all day long, I used her Hoyer lift (personal crane) to put her in
> > her wheelchair, so I could take her out to sit on the front porch; but I
> > had to wrap her gait belt around her armpits and the back of the chair,
> > to prevent her head from ending up in her knees). Along with the
> > physical decline, she declined mentally: Her interaction with the people
> > around her became much more limited.
> >
> > In retrospect (if I'd known she was on the verge of dying), I would have
> > spent more time sitting with her and consoling/stroking her the last
> > couple of her days: but I take solace in all I was able to do 'for' and
> > 'with' her over the last decade (and her PCP's comment that I was a
> > better caregiver than the professionals; and her neurologist's comment
> > that "You set the bar, in my experience, for loving, flexible, creative
> > caregiving; I am grateful to you for those years of hard, patient work:
> > You did really well by her"). [I was able to get her body to Stanford
> > in time for her brain to be preserved for the research study in which
> > she participated: She really appreciated being a research guinea pig, to
> > help prevent future generations from experiencing her disease.]
> >
> > Jo-Anne's best friend Laurel (50 years!) had driven down 3 weeks
> > earlier, and two friends dropped by; I had to wake Jo-Anne for the
> > visit, but she was relatively alert, and enjoyed Laurel's Samoyed puppy
> > (see attached picture; the second picture is Jo-Anne gazing lovingly at
> > Laurel). Laurel and I have shared the sadness of Jo-Anne's death, and
> > also good remembrances; Laurel offered the perspective that we were a
> > good match for each other, and Jo-Anne was lucky to have me over the
> > last decade and last year (in the days after, friends and siblings have
> > said the same, a comfort). One night, Laurel and I spent a couple of
> > hours emailing back and forth with the insights/changes we'd gained from
> > our closeness with Jo-Anne (which was not conducive to a good night's
> > sleep :-) ... when I saw her the next day, I couldn't get enough
> > physical contact with her.
> >
> > Jo-Anne was diagnosed with very-mild Alzheimer's disease 10 years
> > earlier (after 3 years of substantial short-term memory loss; in fact,
> > her cognitive impairment literally started around 1990: The disease
> > starts early, and grows slowly). Our journey together with her
> > Alzheimer's disease was hard, but our life together was good, and our
> > love deepened. Up until 3 years ago, Jo-Anne could still spend her day
> > bicycling all over town by herself (which she loved, and always wanted
> > to do), festooned with tracking devices (occasionally, I'd see she was
> > headed away from home late in the day, and I'd hop on my bike and chase
> > after her). I attached a picture of us that a friend took, when we'd
> > just biked to a local event. We often took our bikes on Caltrain to San
> > Francisco, biked up to Golden Gate Park, and spent the day in the
> > science museum (Jo-Anne loved nature, and turned me into a nature
> > lover). Then Jo-Anne started spending 3 days a week at (wonderful)
> > Rosener House, doing all kinds of activities with fellow folks with
> > dementia (in her first year there, the staff would send new folks to
> > hang out with her, because she was engaging). When she couldn't
> > reliably follow me on her bike, we got a tandem bike, and biked back and
> > forth to Rosener House together (with a long bike ride home at the end
> > of the day: Frequent, extended aerobic exercise is the best thing you
> > can do for your brain). In early 2018, Jo-Anne started sleeping much
> > longer, so she could no longer attend Rosener House; soon after, she
> > started having trouble walking. Then Jo-Anne acquired a fearless
> > companion (she was not bothered by my warning that Jo-Anne once stepped
> > on my foot and broke a toe) from Mon Ami (whose new techie is Steve
> > Fram, ex-Technical Director at IGC!), who got Jo-Anne back into walking,
> > and setup Jo-Anne's smartphone so she could listen to 70's rock-and-roll
> > and soul music. Jo-Anne's sleep got even more erratic, so planning Mon
> > Ami visits became too hard; but a wonderful neighbor started taking
> > Jo-Anne on long walks (she made herself available with just an hours
> > notice, on the days Jo-Anne awoke in time); by late fall of 2018,
> > Jo-Anne could walk 10 blocks (mostly on her own) with her neighbor
> > friend (who Jo-Anne now recognized, and appreciated). By 2019, Jo-Anne
> > rarely spoke phrases, but still understood quite well, and could answer
> > (repeated) questions. We listened to podcasts as we ate, and she'd
> > laugh at jokes, and exclaim about global warming news (guiding my
> > selection of the podcasts we'd listen to). Three months before her
> > death, I went in to the bedroom to see if she was awake, and she gave me
> > a big smile, and said "I've been waiting for you!": She was still
> > laughing at my jokes and foibles, full of smiles, always wanted to have
> > her smartphone strapped to her arm so she could listen to music
> > (sometimes tapping her feet). In her last few months, it took 3
> > (wonderful) neighbors to take her for a walk; but she always liked it,
> > liked seeing the flowers and animals, wanted to continue even as she
> > wore out her brain trying to consciously control her leg muscles. Even
> > in her last month, she still recognized and loved/appreciated old
> > friends, enjoying hanging out with people, laughed and smiled. Her last
> > decade could have been so much worse, and was wonderful in many ways.
> > It was an honor and privilege to take care of her, and I've grown so
> > much in the process.
> >
> > Jo-Anne was courageous. As a teenager, she and her best friend Laurel
> > setup camp near a cliff, and found themselves cornered by adult bears
> > with cubs: They banged away on their metal cups with their spoons, until
> > the bears trundled away. Another time, Jo-Anne and I were walking a
> > trail in Big Sur: Jo-Anne jumped a couple of feet into the air to get
> > away from a rattlesnake (she was very athletic), but was otherwise
> > unperturbed. Another time, we parked in a back alley of the old Whiskey
> > Gulch in East Palo Alto (where my first non-profit got started), so I
> > could finish my work before driving to Yosemite; Jo-Anne heard a noise,
> > went outside to check our van, found that a suitcase had been stolen,
> > then chased after the thief (in the dark): She found him rummaging
> > through the suitcase's contents, yelled at him to chase him away, then
> > fetched the suitcase and contents and brought them back. This
> > courageousness helped our journey with Alzheimer's: Jo-Anne was always
> > willing to do most anything for researchers; or to try most anything to
> > fight the disease, to try to slow-down or overcome the ravages.
> >
> > In decades past, people who met Jo-Anne usually noticed that she was
> > nice and friendly. If they saw more of her, they might realize she was
> > thoughtful/perceptive about people (she was active in a group of people
> > who did peer-counseling; one of our friends told me she was his best
> > counselor). And she was very helpful. When her ex-husband's brother
> > was going through hard times, Jo-Anne let him live in her house for many
> > months. Jo-Anne regularly visited a schizophrenic friend, for years
> > (ignoring his verbal "advances"); she even went to court to prevent
> > California from making him a "ward of the state".
> >
> > People who spent time talking to Jo-Anne would also realize how smart
> > she was. She was an amazing person. I called her a "Renaissance
> > woman": She'd done so many things, and could teach herself to do most
> > anything ...
> >
> > Jo-Anne realized she had picked up racism towards Latinos from her
> > mother: So she took Spanish classes, then lived in Central America for
> > half a year; she saw Nicaraguans fighting against an oppressive
> > dictator, and came home with a strong appreciation for how hard peasants
> > had to work to support their families. During the '80's, she worked
> > hard to prevent the Reagan and Bush administrations from intervening
> > militarily against Central Americans' struggle for popular control of
> > their own countries. She was coordinator for a college group (that did
> > lobbying, and organized speaking events and demonstrations), helped run
> > a political radio program, led a prominent human rights lawyer on a
> > national speaking tour, co-edited a scholarly book, lobbied at the
> > Democratic National Convention in San Francisco, lobbied her
> > Congressional representative (the delegation made his hands sweat :-).
> > One of the culminations of this work was her creation of CARNet (a
> > Spanish "pun"; it stands for Central America Resource Network), as a
> > subset of PeaceNet (that I helped create). She interned with various DC
> > pressure groups to teach them how to put their information into the
> > bulletin boards she created for each Central American country, and
> > helped them build communication channels with grassroots organizations
> > (so the DC groups could align legislative lobbying with local activism;
> > I now consult for a human rights organization, and its "forefather" used
> > to regularly download information from CARNet). She spent months in
> > Nicaragua (while the US was waging the Contra war against the country),
> > helping create Nicarao (a system like PeaceNet). She traveled up and
> > down Central America teaching NGOs (in Spanish) how to use Nicarao's
> > email and bulletins boards (over 2400 baud modems ?!); when she arrived
> > back in Managua, they took one look at her and said "you've got
> > hepatitis, you have to go home".
> >
> > In the '90's (just as her cognition was starting to decline from the
> > disease), she held jobs where she taught herself how to write
> > spreadsheet macros and build database applications. One weekend I flew
> > off on a business trip, and when I came home she'd replaced the furnace
> > (including hooking-up the gas line, and replacing/insulating the
> > ducting) - I don't know how she did it! Then she spent 5 years doing
> > all the logistics to bring techies from all the most underdeveloped
> > countries (using all 4 languages she spoke) to a central location (the
> > place where ISoc, the Internet Society, would have their annual
> > meeting), so volunteers could teach the techies how to connect their
> > countries to the Internet; we have lots of wonderful knickknacks that
> > the mostly-young techies gave to her, she was sort-of their den mother.
> > By the end of that 5 year period, she told a friend that the work got
> > harder each year: She was already aware that her cognition was
> > declining, but she thought it was hormonal issues from menopause (she
> > had serious hot flashes). As she had more and more difficulty doing the
> > myriad of required tasks, she didn't get much support from the
> > administrative folks who ran the conferences (nor from me, one of my big
> > regrets in life) ... but one lefty techie believed in her, and hired her
> > to run a workshop in South Africa (where she mentored some local woman,
> > so they could run future workshops themselves - they probably helped
> > Jo-Anne with tasks that had become harder for her). And when the ISoc
> > conference came back to SF a few years later, all the techies were glad
> > to see her; so she hired a full-size bus plus driver, and narrated a
> > tour of San Francisco for them (I was her guinea pig on a dry run, and
> > she did a great job!).
> >
> > In the '00's, Jo-Anne did computer consulting for a friend who ran a
> > travel agency, including building a website that would collect contact
> > info (she taught herself to do all this). And she became a serious
> > volunteer at the local community cable TV studio: She was the 3rd most
> > active volunteer for a number of years in a row, winning awards at their
> > annual dinner. She did computer graphics, sound, camera, directing, the
> > works. As her memory got worse: First she stopped directing; then she
> > stopped doing computer graphics; and finally, she had to stop doing
> > camera, because she'd immediately forget cues from the director (this
> > was around the time she was diagnosed with Mild Cognitive Impairment,
> > mid-2006).
> >
> > I recently stumbled upon the best illustration of Jo-Anne as Renaissance
> > woman. As I was gleaning distinctive documents from her office, I came
> > across lots of leaflets from the plays put on by her community-theater
> > group in the '70's; as I scanned the leaflets, I realized that Jo-Anne
> > filled the roles of actor, singer, dancer, player of piano and
> > Renaissance stringed instruments, director, producer, set designer,
> > bookkeeper, etc. You wanted Jo-Anne in your group!
> >
> > I'm co-chair and citizen scientist for the Community Advisory Board of
> > Stanford 's Alzheimer's Disease Research Center. They recently filmed
> > me as caregiver: I described our life together, how I developed skills
> > and adaptations as Jo-Anne's dementia got worse, and then I walked
> > around the house showing accommodations I made and describing the
> > techniques I used - they hope to use this material to produce a film for
> > training med students. We tried to arrange filming me taking care of
> > Jo-Anne, but we weren't able to schedule it in time. [I wondered
> > whether it was appropriate to film me taking care of Jo-Anne's personal
> > care, which involves nudity, for which I couldn't get functional assent
> > from her ... until I remembered that Jo-Anne spent many nights dancing
> > nude in one of her community-theater plays :-].
> >
> > My heart is wounded, and my identities are scrambled: It's going to take
> > me a while to rebuild myself, with a lot more crying as part of the
> > process (I got a headache from crying the first day, so I've started
> > using the electrolyte sticks I used for Jo-Anne the last few weeks, as
> > her meals became more limited). But I'm otherwise in pretty good shape,
> > dealing with the myriad things that have to be dealt with, getting calls
> > and visits from loving friends and family, and using
> > computer-programming and movie-watching to take a break from my
> > emotional life (getting to sleep the night she died was hard: As I would
> > fall asleep a couple of times, I'd suddenly wake up with the realization
> > that my identities were shredded, it wasn't clear who I was anymore,
> > there was a Jo-Anne sized hole in my being).
> >
> > I hope you're all doing better than me :-> But I'm doing pretty well,
> > all things considered. [I feel lucky that Jo-Anne taught me how to deal
> > with my emotional being; many of the best parts of me are from her,
> > she's a part of me.] I'm getting so many loving/supportive/affirming
> > visits/hugs, calls, and emails (which typically lead to little bits of
> > healthy crying ... a sort of episodic mini-therapy).
> >
> > My two siblings each spent a week helping me declutter and downsize the
> > house a year ago. That will make it much easier for me to turn the
> > house from "our house" into "my house", the first part of building my
> > new life.
> >
> > -scott
> >
> > p.s. Feel free to share this email with anyone who remembers Jo-Anne, or
> > who is struggling with dementia in their family.
> >
> >
> >
> > On 17 Aug 2019, at 3:53, George Sadowsky wrote:
> >
> > I'm very sad to hear of Jo-Anne Scott's passing. She was a good
> > colleague and a good friend.
> >
> > I first met Jo-Anne at a meeting in Palo Alto in September 1992,
> > hosted by Steve From and Scott Weikert. A few months before that, I
> > had discussed with Larry Landweber at INET'92 in Kobe the
> > possibility of setting up a training program in Internet technology
> > and use for people from developing countries. In the 1970s and
> > 1980s, I worked for the United Nations and was involved in many
> > technology transfer programs in the area of computing, and I had
> > seen to my dismay the state of technical knowledge, education, and
> > resources in most of the countries in which I had worked. Larry
> > suggested giving it a try. Steve Fram was one of the early
> > collaborators, and we were meeting in his office in Palo Alto to do
> > the initial planning.
> >
> > Jo-Anne attended the meeting, I had not known her before, but her
> > enthusiasm for the project and solving logistical aspects of making
> > it happen were contagious, so we became the initial band of
> > co-conspirators for what became ISOC's network technologies training
> > program for people from developing countries. Since INET'93 was
> > planned for San Francisco in August 1993, we decided to hold the
> > training workshop in the Silicon Valley just before the INET
> > meeting, and then have the trainees participate also in that
> > meeting. We believe that the latter step was important in
> > introducing them to the people we hoped would be their future
> > Internet colleagues and would assist them in the developments in
> > their own countries.
> >
> > At the time I was working at New York University and was not
> > situated to assist in local preparation for the workshop. Joanne
> > lived in Palo Alto, and she believed that she could work with
> > Stanford University to provide lodging, classroom space, and meals
> > for the trainees and trainers during August 1993. She set about to
> > do it with a vigor, enthusiasm, and initiative that characterized
> > her contributions to the workshop for the next five years.. She
> > convinced the University to provide dormitory space, meal
> > arrangements,and suitable classroom space for the entire process,
> > and she coordinated all of the preparatory work, including the
> > procurement, delivery, and set up for a large number of personal
> > computers to be used by the three training tracks. She also arranged
> > for several social events in the evenings to foster a sense of
> > professional community among the attendees, as well as to meet local
> > people who lived in the Palo Alto area. I remember her setting up a
> > fireside chat with Vint Cerf one evening, which resulted in a
> > spirited discussion of the potential of the Internet and the
> > importance of what it could provide for development.
> >
> > At the end of INET' 93, Jo-Anne and I had dinner with the INET'94
> > conference chair, and after reviewing the success of our workshop,
> > we decided to do it again, a decision that was repeated for several
> > years after that. Although it may not have been clear to the
> > workshop participants, the amount of logistical preparation
> > required to set up the Prague workshop in 1994 was immense. Only a
> > few years had elapsed since the erosion of the iron curtain and the
> > dissolution of the Soviet Union, and Czechoslovakia was in a rapid
> > state of change. Joanne cooperated with the Czech Technical
> > University to find space for housing in the Hotel Krystal, a tram
> > ride away from the University buildings in which staff would be
> > teaching the four tracks. The Hotel Krystal even had a computer lab
> > with 24 computers, connected to the Internet via a low-bandwidth
> > permanent connection. During the workshop, Jo-Anne learned that our
> > Hotel Krystal had only been a hotel for a few years and before that
> > it had been the training institute for the Czech secret police. We
> > wondered how many microphones were still installed in various parts
> > of the building, including the sleeping rooms. Jo-Anne also
> > discovered the "Chicago Pizza House" (not a typo!) in an
> > underground warren near the hotel, where we went for relief several
> > times to escape the rich Czech food offerings.
> >
> > Jo-Anne continued to participate actively in and support the
> > workshop activities in 1995 in Honolulu, in 1996 in Montréal and in
> > 1997 in Kuala Lumpur. In 1994 she discovered the local travel agent
> > in Palo Alto, Maria Orvell, who worked with Joanne and together they
> > became accomplished in bringing people from all parts of the world
> > to wherever the next INET meeting was going to be held.
> >
> > The process of choosing and assisting participants to attend the
> > workshops was extensive. Applications were solicited through a
> > number of channels, including disseminating information by
> > participants in formal workshops. These all came to Jo-Anne and she
> > prepared them for evaluation by a committee consisting of the
> > teaching staff for the next workshop. After that, the complex
> > process of distributing the financial resources that we were able to
> > obtain, ascertaining the possibility of visas and helping
> > participants to obtain them (including making intercessions with the
> > host country), and making flight arrangements, and this generally
> > had to be performed individually for each participant. The logistics
> > process took a lot of time andinitiative, and Joanne was able to do
> > it, always in time to meet our deadlines.
> >
> > Jo-Anne was a true partner. She embodied the spirit of the Internet,
> > helping, sharing, supporting, and giving of herself so that others
> > might learn and in turn share with a new with others in their
> > country. She believed strongly in the Internet's ability to help
> > people in earlier stages of development, and she gave herself fully
> > to the task. Many workshop participants saw her correctly as
> > fundamental to the success of their experience. I'm glad that she
> > lived long enough to observe the benefits of her contribution to
> > global Internet development, but very sad that she was not able to
> > continue to do so. She will be missed.
> >
> > George
> >
> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
> > George Sadowsky Residence tel:
> > +1.301.968.4325
> > 8300 Burdette Road, Apt B-472 Mobile:
> > +1.202.415.1933
> > Bethesda MD 20817-2831 USA
> > Skype: sadowsky
> > george.sadowsky at gmail.com <mailto:george.sadowsky at gmail.com>
> > http://www.georgesadowsky.org/
> >
> >
> >
> > ---
> > To unsubscribe: <mailto:igc-unsubscribe at lists.riseup.net>
> > List help: <https://riseup.net/lists>
> >
> >
> > ---
> > To unsubscribe: <mailto:igc-unsubscribe at lists.riseup.net>
> > List help: <https://riseup.net/lists>
> >
>
> --
>
> Carlos A. Afonso
> [emails são pessoais exceto quando explicitamente indicado em contrário]
> [emails are personal unless explicitly indicated otherwise]
>
> Instituto Nupef - https://nupef.org.br
> ISOC-BR - https://isoc.org.br
>
>
> ---
> To unsubscribe: <mailto:igc-unsubscribe at lists.riseup.net>
> List help: <https://riseup.net/lists>
>
-------------- next part --------------
An HTML attachment was scrubbed...
URL: <http://lists.igcaucus.org/pipermail/governance/attachments/20190818/0334ff3e/attachment.htm>
More information about the Governance
mailing list