Agenda for June 2014 board meeting
Meeting to be held at 2pm on Sunday 15th June at
irc.starlink-irc.org #autscape
Attendance:
Apologies: Liz
1. Proposals:
1.1 The company secretary proposes that the board approve the annual
report and accounts.
1.2 The registrar proposes that we agree to close registration at 5pm
on 1st July (See Appendix A for rationale)
1.3 The venue coordinator proposes that we obtain a Temporary Event
Notice (TEN) at a cost of £21.
1.4 Film Licensing
i) The venue coordinator proposes that we either:
(a) Obtain a license to watch films, TV shows
(b) Not show any films or TV shows.
(See Appendix B for further information)
ii) If option a), above, is chosen, the venue coordinator proposes
that we obtain the license from either
(a) Filmbank ltd (Known as a PVSL license, cost approx £100)
(b) MPLC (Known as an MPLC event license, cost quoted at £300 -
but could be open to negotiation)
(Note - The list of films and TV shows is considerably bigger
for the MPLC.)
1.5 Debbie proposes we make final decisions regarding the research
requests received for this year’s Autscape. See Appendix C for details.
i) (a) Accept A’s research proposal and allow him his
residential place at Autscape (already accepted and paid for)
(b) Accept A’s research proposal on condition he goes
non-residential
(c) Reject A’s research proposal but allow him attend
Autscape on a residential basis as a normal non-researcing participant
(d) Reject A’s research proposal but allow him attend
Autscape on a non-residential basis as a normal non-researching participant
(e) Reject A’s research proposal and not allow him to attend
Autscape.
(f) Other
ii) (a) Accept C’s research proposal and allow her a residential
place at Autscape subject to the draw process
(b) Accept C’s research proposal on condition she goes
non-residential
(c) Reject C’s research proposal but allow her attend
Autscape on a residential basis subject to receiving a place in the draw
process as a normal participant
(d) Reject C’s research proposal but allow her attend
Autscape on a non-residential basis as a normal non-researching participant.
(e) Reject C’s research proposal and not allow her to attend
Autscape.
(f) Other
iii) If both A and C have their research proposals accepted in i)
and ii) respectively for this year decide
(a) whether to allow both
(b) whether to allow only A
(c) whether to allow only C
iv) If A’s research is allowed, approve magenta/pink circle opt in
symbol, label opt-in or come up with other badge for easy identification of
people who have opted in for A.
v) Approve a new position of research request coordinator.
vi) Approve and publish a date by which all research proposals
(including filming requests) must be submitted by before Autscape each
year. These proposals are hard work and time consuming. Debbie suggests
mid March which is roughly in line with the formal programme submissions
and gives us time to discuss the proposals in April before registration
opens around May.
1.6 Conference Growth and Venue
i) Stephen Proposes that we either:
(a) Keep the main conference at about the same size for 2015,
while agreeing in principle - pending more detail on how much of a deposit
would be needed and any other financial risk to Autscape, and evidence of
demand for both events before committing - to the second retreat style
event that has been offered to be run.
(b) Find a larger venue for 2015, and reject the second
retreat style conference for now due to the financial risk it represents.
(See Appendix D for rationale)
ii) Debbie proposes that we choose someone to coordinate the venue
search. This is currently falling behind because many of us are overloaded
with Autscape work.
1.7 The Registrar proposes that we agree in principle that those who do
not have an Autscape place this year have priority booking for their next
Autscape conference.
1.8 The treasurer proposes we close the Autscape 2013 designated fund
and transfer money from that fund into the reserves.
1.9 The treasurer proposes we create an Autscape 2015 fund, transfer
£2500 from reserves into that fund, and to use that fund for income and
expenditure related to the Autscape 2015 event.
1.10 The treasurer proposes we allow the accountancy fund to be used
for any accountancy service, independent examination, external audit or
other related accountancy service for the preparation of any year's
accounts. (See appendix E for rationale)
2. Follow Ups:
2.1 Personal Data Retention Policy
2.2 Basic DBS Checks
2.3 Outstanding Minutes
2.4 Dutch Autscape
2.5 Website Files
2.6 Guidance for splitting conference organisation from governance
2.7 Newsletter
3. Role reports:
3.1 Chair (Martijn)
3.2 Treasurer (Peter)
3.3 Company secretary (Debbie)
3.4 Venue coordinator (Elaine)
3.5 Web systems (Martijn)
3.6 Honorary secretary (Stephen)
3.7 Registrar (Debbie)
3.8 Childcare coordinator (Debbie)
3.9 Travel coordinator (Peter)
4. Subcommittee, working group and other reports (if applicable):
4.1 Formal Programme subcommittee (Martijn)
4.2 Alternative Programme subcommittee (Trish)
4.3 Fundraising subcommittee (Liz)
4.4 Research subcommittee (Peter)
4.5 Publicity subcommittee (Alastair)
4.6 Purchasing working group (Elaine)
4.7 Anybody else
5. Any Other Business
Appendix A - Rationale for closing registration at 5pm (Item 1.2)
a/ This gives cheque payers time to pay. They may never have booked so
late in the day in the usual circumstance and only be in this position
because we are so over-subscribed.
b/ This gives me time to re-offer a place should it be cancelled at the
last minute.
If we close at 11:59pm everything will happen be nearly 24 hours later.
That’s very tight and favours the quicker people.
Appendix B - Further information for item 1.4 i).
If we decide to obtain a licence it will only cover films and TV shows
already on the list of the company that we choose to obtain a licence from.
Many of the films and TV shows that participants have expressed an interest
in are not on the lists of the two licence issuing companies.
The option of contacting individual producers of the films, TV shows not on
the lists and restricting viewing to them, as decided at a previous meeting
is not viable. On investigation this turned out to be far from easy and it
is in fact quite a complex procedure due to distribution rights.
It has been suggested that we restrict viewing to films and TV shows that
are on the list eg. Some popular blockbuster films, but this would be a
shift from the usual autism related films that we have shown in the past.
Appendix C
Research Requests with personal information redacted for item 1.5, along
with comments on said research requests from board members and outside
consultation about the research requests.
A’s original research request [identifying information redacted]
Dear Sir / Madam,
I am delighted at being offered a place at Autscape, and I will make the
required payment arrangements ASAP.
I wanted to let the organizing staff know a bit about me, is that's ok. I
am a [redacted] year PhD student in social anthropology at [redacted] UK
university, and my study focuses on the various social and cultural aspects
of autism spectrum conditions. Mine is an ethnographic research, which
means that the sort of material I use as data is the experiences and
perspectives of autistic adults. During the past 9 months I have been
regularly attending the meetings of several autism social groups in
different parts of the UK, and conducted approximately 25 face-to-face
interviews as well as dozens of online interviews with people on the
spectrum who kindly agreed to assist me in my efforts.
I first want to make it clear that my main reason for wanting to go to
Autscape is to attend talks and lectures, take part in activities, and get
to spend time with some of the people I have befriended over the past year.
Whatever your answer is regarding my question to come, I would still very
much want to attend the conference as a guest.
Seeing as Autscape would no doubt offer an ideal opportunity to deepen my
knowledge and understanding of the experiences of autistic adults, it would
be extremely valuable for my purposes if I could conduct a bit of research
while there. As a social anthropologist - and one studying autism, no less
- I am very much aware of the possible pitfalls of doing research in this
kind of setting, particularly when relatively vulnerable people are
concerned. I will therefore take all possible measures to make sure my
actions comply with the strictest ethical and professional standards, which
I am glad to elaborate on. At this point, it might be sufficient to point
out a few principles I will invariably abide by: I will always identify as
a researcher, and ascertain that people I engage in conversation are aware
of this and happy to cooperate; I will never reveal anyone's name or
identifiable details; I will not use any sort of recording device at
Autscape, or hand out questionnaires, or do anything that would potentially
make people feel uncomfortable or that their privacy is being invaded; and
finally, I will treat everyone present with the utmost respect and dignity.
If it would be helpful, I am glad to refer you to some of my research
participants (provided they approve, of course), to vouch for my
professionalism and character.
Autism research currently suffers from many drawbacks; it is often biased
and reductionist, and the discourse it promotes is often offensive and
dehumanizing to autistic people. My own research project aims to counter
this discourse by acknowledging the validity and importance of the
perspectives of autistic people, and by acknowledging their own expertise
on the subject. Being given the opportunity to collect some of the
perspectives of the visitors to Autscape will undoubtedly further assist me
in writing a thesis that is valid, nuanced, representatives of autistic
people's own points of view, and hopefully even influential.
Board writeup of A’s research proposal
A is interested in people’s view of their autism. In particular the way a
lot of autistic people like to learn, research and discuss autism to an
extent not seen by people with other diagnosis (e.g. asthma). He is not
interested in individual behaviour. The ‘different’ behaviours the
individuals exhibit are not what A's proposal is about.
The kind of thing that would be included in A's research is how autism is
an essential part of being. He would take comments from anywhere if the
person has opted in. Other like areas he is interested in include:
* Arguments by people for and against 'Autism is a disability’.
* Conversations about the nature of autism.
Being in a room waiting for people to come to him would not work for A. He
needs to be around when people spontaneously decide to discuss things of
interest. That could happen in the dining room or a discussion or anywhere
really.
Autscape has an opt-in model for participating in research and due to the
difficulties people have handling social pressure we don’t allow people be
asked on the spot to contribute to research.
We discussed the incompatibility of the two positions and decided that an
opt-in symbol would be the way to go. If A hears a conversation he is
interested in he can only make notes of it if everyone conversing is
wearing that symbol. Just like you cannot take a photo of someone with a
black circle, so you cannot include in your research, even indirectly,
someone not wearing the symbol.
Participants can add and remove their badge as they please. A will respect
it if people choose not to wear their opt-in badge all the time.
Any photos taken by A or given to A will not have identified participants
(and A is aware and understands the black circles rules). Photos are used
to assist A remember what happened.
For example a group of people spontaneously burst into a song celebrating
Autism. A may oversee this and go over. If anyone is wearing the opt-in
badge he will listen, and possibly interact with them. Maybe get a photo
of the subset who have opted-in.
A may also offer to run discussions. It would be made clear that these are
for his research. Or like with the documentary people last year, others
may choose to run discussions or other happenings in a place where everyone
has opted-in.
A will write a summary page including consent form for the information pack
and we would also have some at the venue.
Publications: It is the aspects of autism and social settings shared in
common rather than what is unique that would be published. Everything
would be anonymised. There wouldn’t be direct quotes.
People have 28 days to withdraw their permission after the event.
A will talk with presenters before including something said by a
presenter. He understands that sometimes a question can be asked of
presenters that presenters had not expected, that they are also
participants and thus they too should be allowed to opt-in.
C’s original research request [identifying information redacted]
Dear Sir/Madam,
My name is [redacted] and I am a PhD student at [redacted] non-UK non-EU
University. My dissertation topic is [redacted] and it focuses mostly on
autistic people and social media. This research is being conducted under
the supervision of [redacted].
My research focuses on the meanings of autism to autistic people through
the two main concepts: “autistic Identity” and “autistic space”. Autistic
identity and autistic space are important parts in the creation of autistic
culture where autistic people share their unique voice with each other and
create their own cultural meanings. The study aims to explore the direct
voice of autistic people as manifested mostly in the social media and
specifically in blogs, vlogs and community websites.
Autistic conferences as Autscape are great opportunities not only to meet
in person and interact but also to create, practice and construct autistic
space, autistic identity and autistic culture. As Sinclair (2010) once
said, the conferences are in a way an extension of the virtual communities.
Therefore I find them crucial to the process of exploring the main concepts
of autistic culture.
The research will include an observation of these processes in the physical
space of conferences that run by and for autistic people.
The direct voice of autistic people is under-explored and I hope you will
agree to allow me to conduct a participant observation at the 2014
conference.
Attached is a formal informed consent form that provides more detailed
description of the research goal and about the protection of the research
participants.
(Attachment text: The purpose of this study is to learn about the
construction of autistic space and autistic identity through observing in a
conference run by and for autistic people. The researcher is interested in
observing in the natural setting of the conference. The observation will
focus on the physical settings and on activities that can teach about the
nature of autistic space and/or about autistic identity. During the
observation, no contact or social interaction will be initiated by the
researcher unless initiated by the participant or specifically agreed by
the participant before creating a direct interaction between the researcher
and the participant.
This research is being conducted under the supervision of [redacted].
What will the participants do in this study:
The researcher will conduct a participant observation on the natural
interactions of the conference participants and will participate in the
conference presentations as an observer. The nature of participant
observation does not require from the participants to do anything they
wouldn’t have done without the researcher’s presence. In some cases, the
researcher will conduct informal conversations with participants only if
they initiated the interaction and agreed to answer some questions that are
related to the research.
Risks:
There are no anticipated risks, beyond those encountered in daily life,
associated with participating in this study. The researcher will strictly
follow the conference rules and codes of behavior as defined by the
organisers in order to protect the participants’ sense of a safe place at
the site.
Voluntary withdrawal:
The participation in the study is completely voluntary. It means that any
of the participants can withdraw from the study at any time if it is too
difficult for them or for any other reason. However, it is important for me
to learn about the different aspects of autistic space and autistic
identity construction through observing the interactions and listening to
the participants’ perspective on the aspects that are related to what
autism is, everyday aspects of autism, where and when do they feel the most
comfortable and what autistic identity is to them. If the participants
would feel uncomfortable during the observation process or with any
question during informal conversations, they may withdraw or choose not to
answer it. Any of the participants may withdraw from the research at any
point by informing the research associate that they no longer wish to
participate (no questions will be asked). Their decision to participate,
decline, or withdraw participation will have no effect on their status or
relationship with the redacted University.
Confidentiality:
Your participation in this study will remain confidential, and your
identity will not be stored with your data. All data and consent forms will
be stored in a secure space with an access only to the researcher involved.
Results from this study may be presented at conferences and/or published in
books, academic journals and/or in the popular media.
Further Information:
If you have questions about the study or about your rights as a participant
in this study, please contact [redacted]
Who to contact about your rights in this study:
If you have any concerns about this study or your experience as a
participant, you may contact [redacted].
Agreement:
The purpose and nature of this research have been sufficiently explained
and I agree to participate in this study. I understand that I am free to
withdraw at any time without incurring any penalty. I understand that I
will receive a copy of this form to take with me.
Board writeup of C’s research
C's research is two fold. She would be happy to do individual research in a
dedicated room with terms and conditions. She understands this would be opt
in etc. as we did for the film makers.
However, what she appears to want to do more than that is just participate
in activities and see the lectures etc. C will not be standing, observing
and taking notes and she would not want to cause distress to anybody by
doing that.
But, her reasons for participating are so she can understand the concepts
of autistic space, safe space and identity.
If C wants to understand the concepts described they must form part of her
thesis. Therefore she doesn't have to do anything other than experience it
and write about what she understands from that experience. It is however
still a form of observing.
The board member who communicated with C doesn’t think C will understand
how some of our participants will view it, to put it simply, as intruding
because on the surface it looks harmless enough.
Comments from various people:
* A has accepted a residential place knowing that the board may not decide
to allow him carry out his research at Autscape. He has given an
undertaking to abide by the board's decision as to whether this is allowed
or not. C does not yet have an offer of any place.
* C contacted us before putting a booking in. A told us of his research
after he received a place in the draw.
* C’s proposal came in on 6 June, A’s proposal came in on 28 May. We have
had more time to discuss A’s proposal.
* ... a bit concerned about ANY research that takes place at Autscape
because it is such a valuable safe haven to participants.
* Wondering how comfortable people who don't opt in would be with the
opt-in system.
* If we're full, allocation for researchers is in direct competition with
our target audience. Regardless of whether or not we allow the research,
this shouldn't be allowed at the expense of the core mission.
* [Describing an event external to Autscape] The feeling that we were being
analysed even in our leisure time led to problems for most people despite
them not being autistic.
* We undertake to provide a safe space for people, many of whom feel very
vulnerable even at Autscape. Whilst I am happy for people to do research in
separate rooms under our guidelines, I don't see how we can stop general
observation going on and I fear this will lead to people not feeling safe
enough to return and even finding they have to leave.
* A is a researcher who is NT. However, IMO autistic groups shouldn't judge
researchers on the basis of whether they do or don't identify as autistic
themselves (because IMO this is prejudice the other way round) but rather
on their attitudes and ethics. As far as I can see from what he himself has
written he is strongly supportive of autistic voice and has generally
ethical attitudes.
* Participants must be allowed to withdraw from research at any time,
including well after the event.
* The researchers need to identify themselves as a researcher whilst acting
in that capacity.
* The documentary makers (with as far as we can see similar attitudes)
worked out pretty well. Allowing academic research which furthers the
positive representation of autistic people through our own voices is
consistent with Autscape's objects (particularly (b)).
[ http://www.autscape.org/organisation/memorandum_and_articles.pdf ]
(b) to advance the education and awareness of the public in all matters
relating to autism and in particular to increase public awareness of the
problems faced by, and the general circumstances of, autistic people and
their families, thus encouraging increased acceptance and support of
autistic people in the community;
* Autscape’s object (a) from the above document is:
(a) to provide respite and support for autistic people by (i) organising
retreat-style conferences at which autistic people can learn, engage in
activities, socialize and relax in an autistic-orientated environment.
* Data protection. Researchers in the UK are under the EU data protection
act. We don’t know the data protection rules for universities not in the
EU. If C’s proposal is accepted we may have to ensure any personal data is
kept within the EU.
On the subject of having a deadline for when people can submit these
requests and nominating someone to deal with them (or assigning the task to
info@).
Autscape offers a really good place to come and observe autistic behaviour
or conduct other types of research. It is likely that we can expect to get
more requests like these in the future, with all the potential problems
entailed.
Therefore we need to be thinking about framing a policy around research
(and perhaps 'projects' e.g. the filming last year) to help us make
decisions in the future.
Appendix D
Rationale for 1.6 i)
In the discussion on this, there seemed to be something approaching a
consensus that we couldn't afford both financial risks of both growing the
main conference, including booking a larger venue, and funding an
additional event. There also seemed to be something approaching consensus
that the main conference should come first, since that is the primary way
that we fulfil our charitable duties, and that we shouldn't run a second
conference if doing so would jeopardize the conference we currently run.
When we have previously discussed growing (Last done in the January 2014
meeting), we have always decided to grow the main conference because of not
having the time to run additional conferences, while raising concerns about
how large would be too large, and would we know what too large was before
we passed it and suddenly wound up with a conference that didn't resemble
Autscape.
This changes the fundamental assumption behind such a decision, on account
that someone external to the board has offered to run an event. The
suggested support that said event would need would represent an increase in
the amount of time some key roles would require to take on on a voluntary
basis, which is another consideration to make on this decision (It may
require shuffling of roles resulting in a general increase for everyone to
accommodate the extra workload it would represent for, e.g., the
treasurer.).
The treasurer noted in the discussion that ideally we'd change our reserves
policy before diversifying in the way that a second conference represents,
since our reserves policy is predicted on having money dedicated to the
current conference, money dedicated to the next conference so that we can
have two deposits on the go at once, and general reserves covering any
unexpected events - as such we do not currently have reserves predicted on
running a second event. However, by sheer coincidence, we're expected to be
at the upper end of our reserves policy this year.
In the January 2014 meeting we asked the research subcommittee to look for
potential venues with capacity between 120 and 150 people. The likelihood
of finding a venue of that size may be relevant to this decision, as might
the fact we're currently looking for a slightly larger venue.
Appendix E
Rationale for 1.10
When funds were designated for accountancy services, the decision
specifically related to the 2011-12 accounts, however, the instructions
related to this were lost and the fund was not used as intended. I would
nevertheless like to leave the fund as a designated fund for accountancy.