Tag Archives: inclusion

Roundup: On Accessible & Inclusive Conferences & Meetings

Accessible? Twist handle, then pull

I just returned from the annual meeting for the Medical Library Association, where multiple discussions arose around what would it look like to expand what is done to make the conference both accessible and inclusive. [Yes, the image at the head of this post is an actual photo from the actual meeting.] Just a couple weeks before that I was privileged to attend “Cripping” the Comic Con 2019 which was, by FAR, a truly exemplary model for how to create an inclusive event. (I’m hoping to write a second post about what blew my mind so much about CripCon!) Pretty much the same topic also arose in one of my Facebook groups, Teaching Disability Studies, where several of the resources mentioned here where shared.

Since my organization (UofM) has done some work in creating resources around this, and since I was on the original committee that created our resource, I volunteered to share that resource with MLA and put together a collection of selected resources related to this topic. The resources collected here are organized alphabetically within section (resources, readings) by either the author or providing organization. Organizations represented in the post include:
– ABA (American Bar Association)
– ACM SIGACCESS
– ADA National Network
– ASAN (Autism Self Advocacy Network)
– New York State
– Ohio State University
– Syracuse University
– University of Arizona
– University of British Columbia
– University of Michigan
– Vera Institute of Justice

RESOURCES

ABA Section of Civil Rights and Social Justice. Planning Accessible Meetings and Events, a Toolkit https://www.americanbar.org/content/dam/aba/administrative/mental_physical_disability/Accessible_Meetings_Toolkit.authcheckdam.pdf

You want to know what the lawyers think about what you should do? Well, start here. This 22 page PDF provides a number of thoughtful strategies to promote accessibility and inclusion in events, from working with attendees and presenters in an interactive way to plan the best possible event to post-event surveys designed to elicit information on accessibility improvements needed for future events. I’ve been working in disability spaces and communities most of my life, and they had suggestions that were new to me. I have some more work to do. This one is a must read.

ACM SIGACCESS. Accessible Conference Guide. https://www.sigaccess.org/welcome-to-sigaccess/resources/accessible-conference-guide/

It’s a bit amazing to me how each of these guides has something wonderful and necessary that I missed seeing or which wasn’t included in the other guides. This one includes discussions around making events safe for people with migraines, having drinking straws available, and where can a service dog relieve themselves with causing problems for the event. They point out that simply asking for a sign language translator doesn’t tell you which version of sign language the viewer needs, since there are regional and country variations which can be quite significant. They include example draft language for eliciting accommodation requests from attendees, registration, formatting your promotion material PDFs accessibly, and having a triage plan in case problems arise. This document is updated regularly, and this newest version was just updated a few weeks ago (April 2019). Note that they also have an Accessible Writing Guide and an Accessible Presentation Guide. Must read.

ADA National Network. A Planning Guide for Making Temporary Events Accessible to People With Disabilities. https://adata.org/publication/temporary-events-guide

Okay, this thing has chapters. I mean, CHAPTERS. That tells you something. In some ways, it’s almost too detailed. However, it also focuses almost exclusively on physical factors (venue, parking, toilets) and has very little on the interaction or experience. While this is highly detailed, the intended audience seems to be focused on government or community event planners, and not for professional events or conferences. This is more of a basic introduction to what is involved, and is intended for broad audiences. Also available as a 61 page PDF and a 119 page large print PDF.

ASAN: Planning Accessible and Inclusive Organizing Trainings: Strategies for Decreasing Barriers to Participation for People with I/DD https://autisticadvocacy.org/resources/accessibility/ PDF: https://autisticadvocacy.org/wp-content/uploads/2017/11/White-Paper-Planning-Accessible-and-Inclusive-Organizing-Trainings.pdf

While several of the other resources listed here focus primarily on physical barriers to inclusion, this document is absolutely essential for those with sensory integration concerns or learning disabilities. It explains and describes the impacts of such factors as loud or unpredictable noise, motion, and other stimuli; unpredictable events; abstract or overly-complex language; speaking spontaneously (or putting people in situations where they are expected to improvise their reactions); body language; touch; and much more. It includes information on scheduling that describes the need for breaks, use of plain language content, color communication badges, and the risks to the audience of some popular presentation engagement strategies. This is the only of the resources listed here to richly describe the role of support persons in events. I doubt it would be possible to plan an inclusive event sensitive to any of these issues without, at a minimum, reading a document like this one, or being close to someone who shares these issues and concerns. A must read.

New York State, Department of Health: People First: How To Plan Events Everyone Can Attend https://www.health.ny.gov/publications/0956/

This is a lovely document which includes both high level thinking around accessible events as well as fairly detailed specifics. This is one of few of these types of resources that spends time on the importance of developing a formal policy with specifications for events, and has suggestions for approaching the development of a policy if your organization lacks one. It includes nitty-gritty suggestions, such as “Plan for 30% more meeting space when 10% or more of the participants will use mobility aids,” having ramps to the stages, and how to look for tripping hazards. Absolutely a must read. Also available as a 13-page PDF.

Ohio State University: Composing Access, An invitation to creating accessible events https://u.osu.edu/composingaccess/

Includes information on making accessible presentations, including live-streaming and handouts (when, why, and how), as well as the expected accessibility thoughts and practices for conference organizers. Includes resources; ways to encourage attendees to act as advocates for accessibility and inclusion; descriptions and videos for creative practices like interaction badges, quiet rooms, “crip time,” and more.

Syracuse University: A Guide to Planning Inclusive Events, Seminars, and Activities at Syracuse University http://sudcc.syr.edu/resources/event-guide.html

Available only as a 27 page accessible PDF. This exceptionally detailed resource is far too rich a resource to do justice to in a brief description. Syracuse is the home of Cripping the Comic Con, and it is clear that they have really put considerable time and thought into not only conceptualizing accessible events, but putting this into practice, seeking feedback, and learning from experience. It has four appendices, of which the most essential, to my mind, is Diane Wiener’s example introduction in Appendix B. In addition to the usual content (planning, venue, promotion, and presentation) this guide includes prudent practices for inclusive use of language, use of images and media, the role of environment (fragrance, sound/noise, lights, color), and much more. This is my own preferred go-to guide for starting with this. I guess that means I should mark it a must read, too.

University of Arizona: A Guide to Planning Accessible and Inclusive Events https://drc.arizona.edu/planning-events/guide-planning-accessible-and-inclusive-events

A short example of how to write a resource like this for a campus community. Includes a brief but helpful section on how to train event support staff.

University of British Columbia: Checklist for Accessible Event Planning https://equity.ok.ubc.ca/resources/checklist-for-accessible-event-planning/

Exactly what it says — a collection of terse reminders of what should be remembered. Includes roughly 60 entries in 7 categories (planning, marketing, transportation, space, programming, catering, final). Available as a 9 page PDF download.

University of Michigan: Ten Tips for Inclusive Meetings https://hr.umich.edu/working-u-m/workplace-improvement/office-institutional-equity/americans-disabilities-act-information/ten-tips-inclusive-meetings

This information in this resource is presented in a layered fashion for ease of access, action, and remembering, similar to the UBC checklist. The ten tips are very short, focusing on major areas to consider, but include links to richer information for those willing to explore more deeply. The design stresses retention and adoption of the concepts by making them easy to access and simple to remember. Main areas included are scheduling, accessible presentations, promotion, restrooms, food and drink, personal assistance, offsite participation, representation, transportation and navigation, and options for help for event planning and management.

Vera Institute for Justice: Designing Accessible Events for People with Disabilities and Deaf Individuals https://www.vera.org/publications/designing-accessible-events-for-people-with-disabilities-and-deaf-individuals

This isn’t a guide or a checklist. This is a toolkit, and boy, does it have a lot of different tools. They have several different tip sheets focusing on special aspects of meetings and events, from registration to budgeting, and including venues and how the meeting itself is handled. They even have a tip sheet for working with Sign Language Interpreters, and how to develop successful contracts with hotel management (which sounds worth its weight in gold). These aren’t one page tip sheets, though. The tip sheet for designing accessible registration is 7 page long. That’s a lot of tips. These are so well done that countless other disability organizations host copies on their own websites and recommend them for their own audiences and clients. These are another must read.

Additional resources & examples

ACS-ALA, Accessibility and Libraries, October 4, 2017. Rough edited CART copy (Webinar transcript). https://docs.google.com/document/d/1JIVc5-QcvBb74AitQXrnFfHReYk6nnKez3gR33llHvU/edit

ALA Annual: Accessibility https://2019.alaannual.org/general-information/accessibility

Inclusion BC: How-to Make Your Event More Inclusive https://inclusionbc.org/our-resources/how-to-make-your-event-more-inclusive-2/ PDF: https://inclusionbc.org/wp-content/uploads/2019/02/Makeyoureventinclusive.pdf

NCCSD Clearinghouse and Resource Library: Inclusive Event Planning https://www.nccsdclearinghouse.org/inclusive-event-planning.html

WorldCon 76: https://www.worldcon76.org/member-services/accessibility

TO READ

This is a twitter thread from a few weeks back that “won Twitter,” as in it went viral, with 144 replies, 294 Retweets, and 1,562 Likes. It began with Alex Haagaard’s mention of their own accommodation requests at conferences, and resulted in a highly educational thread of accommodations people need or wish they could request at conferences. I recommend reading this thread for any conference planners or organizers.

MORE

“If part of what we train our students to do is enter into scholarly conversations, how we go about that conversation in our own professional settings matters.”
Accessibility at ASECS and Beyond: A Guest Post by Dr. Jason Farr and Dr. Travis Chi Wing Lau https://asecsgradcaucus.wordpress.com/2019/02/21/accessibility-at-asecs-and-beyond-a-guest-post-by-dr-jason-farr-and-dr-travis-chi-wing-lau/
Includes: “Toward a More Accessible Conference Presentation” https://drive.google.com/file/d/1xzGyfVlMRUwZMjuZ6mef87OXCIfN3uiW/view

“Use the microphone: this gets repeated dozens of times on Twitter every conference for at least the last five years. I guess I’ll just say: yes, abled people, using a microphone indicates that you are considerate of D/deaf and hard-of-hearing folks, and suggesting that others do is beneficial to the audience.”
S. Bryce Kozla. Accessibility and Conference Presentations https://brycekozlablog.blogspot.com/2018/01/accessibility-and-conference.html

“But I believe that losing my hearing was one of the greatest gifts I’ve ever received. You see, I get to experience the world in a unique way. And I believe that these unique experiences that people with disabilities have is what’s going to help us make and design a better world for everyone — both for people with and without disabilities. … I stumbled upon a solution that I believe may be an even more powerful tool to solve some of the world’s greatest problems, disability or not. And that tool is called design thinking.”
When we design for disability, we all benefit | Elise Roy https://www.ted.com/talks/elise_roy_when_we_design_for_disability_we_all_benefit?language=en

On Facebook and Uncomfortable Ideas

Last night’s moonlight through the window, filtered to make the black photo visible

I’m going to say something unpopular and uncomfortable. Mark Zuckerberg is getting a lot of flack for his comment in the Recode interview about Holocaust deniers. As a librarian, I see that what he’s really talking about is CENSORSHIP.

“I also think that going to someone who is a victim of Sandy Hook and telling them, “Hey, no, you’re a liar” — that is harassment, and we actually will take that down. But overall, let’s take this whole closer to home…

I’m Jewish, and there’s a set of people who deny that the Holocaust happened.

I find that deeply offensive. But at the end of the day, I don’t believe that our platform should take that down because I think there are things that different people get wrong. I don’t think that they’re intentionally getting it wrong, but I think-… It’s hard to impugn intent and to understand the intent.” Mark Zuckerberg, Recode Interview

People are latching onto the small concept and missing the big picture. It was an example, not necessarily a specific. It was an example of something that deeply offends him, but which he is refusing to censor. It was about trying to create a place for unpopular and uncomfortable ideas and conversations, about embracing differences. Ideally, that would be a safe place, an open space, a respectful place, but there’s a lot of people in the world, and I don’t know that very many of them are consistently able to have conversations that are safe, open, and respectful on topics that connect to their fears and wounds.

Think for a minute about ideas that each of us hold which are problematic for others, and what would happen if we applied the same criteria for exclusion to our ideas and voices as we do to the ideas of others that make us feel bad. I have friends who are right wing, and left wing; LGBT, and conservative Christians; scientists, and astrologers; kink aficionados, and asexual survivors of child sexual abuse; highly educated researchers & writers, and people with learning disabilities or from underprivileged and under-resourced backgrounds and communities. My hope is this diversity of people will encourage conversation and awareness across the divides, that we can and will LEARN from people whose thoughts and experiences are different from our own, that we can encourage flexibility and examination and questioning of what is or is not a good trusted information source and why.

So, Facebook isn’t perfect, and people aren’t perfect, and Mark Zuckerberg isn’t perfect, and I’m not perfect. I respect that Zuke is trying. I respect that it is basically impossible to define a conceptual boundary, a line in the sand, for what can and can’t be posted here, without causing harm. There is harm if the line is too loose or too tight. It needs to be a blurry boundary. We need to give people the benefit of a doubt. We need to assume that most people are at heart good people with good intentions, and create opportunities to inform them and ourselves, hopefully creating opportunities to change minds and hearts.

If we tell people they can’t be here, they’ll go somewhere else, and we won’t know who they are, or what they think, or why they think that. We won’t know what they are doing, or what they are planning. We will be creating additional darkness, for unwelcome ideas to fester and turn dangerous.

Zuckerberg had a great response that isn’t getting as much attention as the original remark.

“Our goal with fake news is not to prevent anyone from saying something untrue — but to stop fake news and misinformation spreading across our services. If something is spreading and is rated false by fact checkers, it would lose the vast majority of its distribution in News Feed. And of course if a post crossed line into advocating for violence or hate against a particular group, it would be removed. These issues are very challenging but I believe that often the best way to fight offensive bad speech is with good speech.” Mark Zuckerberg Clarifies, Recode

I don’t know about you, but I’m on Zuckerberg’s side with this.

Blue is for Borgs (On WAAD), Let’s Walk in Red Instead

Borg cyborg prosthetics Walk In Red

It happens every year now. I end up having a gentle, delicate but firm conversation with someone (individual or organizational representative) who really, REALLY want to do something to be supportive and help people with autism, and to do so they have jumped on the bandwagon of the “Light it up Blue” movement founded by Autism Speaks. They mean well, but they don’t realize the broader context.

BLUE = Autism Speaks

World Autism Awareness/Acceptance Day
World Autism Awareness/Acceptance Day

When the context is provided, they either say, “I didn’t know,” or “Don’t we get brownie points for good intentions?” or “Well, it might mean that for you, but not for us,” or “That’s only true in America,” or “It’s too late, we already committed.” The folk who say, “I didn’t know” are usually actually listening, and will make a change in the future. I’m not so sure about the others. I’ve written letters to companies that are “going blue” and collecting funds to donate, trying to make them more deeply aware of the impact. There are companies where I no longer shop, and have told them why. Not that it really has any significant impact, from what I can tell. And I’m afraid that each complaint, like this one, ends up instead feeding the adoption of the campaign, creating free publicity, and feeding negative messages about autism that lie at the heart of what Autism Speaks does.

Here let me explain. Briefly.

SELECTIVE TIMELINE OF AUTISM RIGHTS MOVEMENT

1970 – April chosen as National Autism Awareness Month in the United States by the Autism Society.
1995 – First Autreat, November.
2002 – Autism Awareness Year in the United Kingdom
2002 – Autism Sunday, second Sunday of February, launched in London
2005 – First Autistic Pride Day, June 18th, in Brasil with the theme “Acceptance not cure”
2005 – First Autscape began July 26, near Somerset, UK
2006 – Autism Acceptance Project founded by Estée Klar
2007 – World Autism Day designated by the United Nations
2008 – First World Autism Day, April 2
2010 – First Light It Up Blue (#LIUB) Campaign launched by Autism Speaks
2011 – Autism Acceptance Day created by Paula Durbin Westby
2015 – First Walk in Red campaign (supported by Paula Durbin Westby).

Walk In Red

You see that autism advocacy has a long and strong history, before and after the first efforts by Autism Speaks. What has happened with the Autism Speaks efforts is basically that they have, well, co-opted the idea of the World Autism Day for awareness and fundraising of their own projects. I’m serious. Here, look at some definitions of the word “co-opt.”

Free Dictionary: co-opt
“1. to choose as a member.
2. to assimilate or win over into a larger group.
3. to appropriate as one’s own; preempt.”
“3. To take or assume for one’s own use; appropriate: co-opted the criticism by embracing it.
4. To neutralize or win over (an independent minority, for example) through assimilation into an established group or culture: co-opt rebels by giving them positions of authority.”

Merriam-Webster: co-opt
“: to cause or force (someone or something) to become part of your group, movement, etc.
: to use or take control of (something) for your own purposes”
“2 a : to take into a group (as a faction, movement, or culture) : absorb, assimilate
b : take over, appropriate (a style co–opted by advertisers)”

Autism Speaks have a LOT of money behind them, connected with a lot of famous folk, and have built that into such a strong brand recognition that when you search for Autism Day in Google, you have to actually scroll way down to find the links to the United Nations, the folk who are REALLY behind it. All of the top leading links about it are for Autism Speaks and their fundraising efforts.

Google Search: Autism Day

Whoa. And again, WHOA. And the whole thing with “Blue”? That was to match the Autism Speaks logo. Yes really. So, even if people aren’t aware of it, even if they’ve forgotten, every time someone connects “blue” with “autism” they are creating more support and awareness for the organization Autism Speaks, their fundraising campaigns, their marketing, and their agendas.

Is that such a bad thing? After all, they are a charity, and the money still all goes to support people with autism, right? Wrong.

Not to say that Autism Speaks do nothing worthwhile (some of their Toolkits are genuinely useful), it is the organization’s underlying tenants are viewed with alarm within the larger autism advocacy community, who don’t necessarily have the millions of dollars to get eyes on their ideas. Here is a tiny selection illustrating some of those concerns.

Autistic Self Advocacy Network (ASAN): 2014 Joint Letter to the Sponsors of Autism Speaks

John Elder Robison: I resign my roles at Autism Speaks

ASAN Vancouver Disability Day of Mourning: Introductory Speech

Forbes: Why Autism Speaks Doesn’t Speak For Me

The Daily Beast: “Autism Speaks”- but Should Everyone Listen?

Boycott Autism Speaks

Autism Women’s Network: Is Autism Speaks a Hate Group?

The controversial and contentious dialog seems to center on these issues.

Awareness versus Acceptance

Awareness vs Pride

Assimilation versus Inclusion

Stigma versus Respect

Now, let me go back to the beginning of this post. The Borg. What the community of autism advocates is seeking is to celebrate their skills, talents, uniqueness. The United Nations theme for World Autism Day this year focuses on the value of persons with autism as employees (click on the word “inclusion” above). This has also been celebrated recently by the Wall Street Journal and Entrepreneur. In its long history, the autism advocacy movement quickly shifted from simple “awareness” to more active and joyful celebrations of the value of persons with autism. I’ve been tracking the Autism Speaks controversy for a very long time. I don’t need to explain here how what they do tends instead to undermine those happier and loftier goals.

I do have a personal stake in this. My son has autism. My brother has autism. There are some who think I have autism and was just never diagnosed. I wouldn’t be surprised. Last time I was home, I rescued this beautiful piece of blown glass made by my autistic brother, who was preparing to discard it as not meeting his standards. It wasn’t good enough. I love it, treasure it, and keep it in my office where I see it everyday.

Blown Glass (discard)

Also last time I was home, the pastor of my brother’s church made a point of telling me how important and highly valued he is in their faith community. I don’t want to hear anyone tell either my brother or my son that they aren’t good enough, or that they need to be assimilated. I have many friends who are on the autism spectrum. Some of them are even non-verbal, with what is considered severe autism. I tell you, when my friend who is non-verbal is complaining on Twitter about something her husband said to her, knowing that she couldn’t argue back … well, let’s just say, I don’t think of her as being non-verbal.

What is it that we want of people with autism? Do we want to treasure them and celebrate their uniqueness? Or …

“We are the Borg. Lower your shields and surrender your ships. We will add your biological and technological distinctiveness to our own. Your culture will adapt to service us. Resistance is futile. … You will be assimilated.”

If you still think of “blue” as the color of autism, you may not even be aware how it happened, but you have already been assimilated.

MORE ON THE RHETORIC OF AUTISM

Paul Heilker and Melanie Yergeau. Autism and Rhetoric. College English 2011 73(5):485-497. http://www.jstor.org/stable/23052337?seq=1#page_scan_tab_contents

Autism and Rhetoric (a Prezi synthesizing the high points of the Heiler & Yergeau article).
https://prezi.com/kz2mvlhp-7gz/autism-and-rhetoric/

Alicia A. Broderick. Autism as Rhetoric: Exploring Watershed Rhetorical Moments in Applied Behavior Analysis Discourse. Disability Studies Quarterly 2011 31(3). http://dsq-sds.org/article/view/1674/1597

Paul Heilker. Autism, Rhetoric, and Whiteness. Disability Studies Quarterly 2012 32(4). http://dsq-sds.org/article/view/1756/3181

Emily Malabey. How the Rhetoric of Autism Speaks Has Hurt Autistic People. Council for Autism and Neurodiversity November 15, 2013. http://www.autismcouncil.org/?p=2802

PF Anderson. Beyond “Light it Up Blue” — Maybe “Light it up Gold”! https://etechlib.wordpress.com/2014/04/02/beyond-light-it-up-blue-maybe-light-it-up-gold/
(Check out the Storify of Ibby Grace presenting on this)