Tag Archives: disability

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 Plastic, Straws, Food, Climate, and Culture — Impacts of Technology Change on Individuals and Communities

Seeking a Middle Ground Between #WarOnWaste and Accessibility (#a11y / #SpoonieLife)

This is not a new topic. We know plastic is bad. Bad for us, bad for animals. Bad for the environment. And then there is the whole deal with the Great Pacific Garbage Patch, comprised primarily of plastic waste. So, bad. However, we’ve spent a couple generations now creating a culture that revolves around bad things like plastic and gasoline, and more. You can’t turn it over in a heartbeat. Because we know it’s bad, we want to fix it RIGHT NOW, but if we try to do that we really need to ask who is going to be impacted and how. This is part of how we need to be thinking about bringing in new technologies, and about replacing old technologies, and the whole spectrum of what are we doing with tech.

If we get rid of plastic straws (as some cities and even countries are doing, along with other single use plastics), who does it help, how does it help them, does anyone get hurt, again how, what are the alternatives, … we need to ask all these questions. We also need to ask what arrangements or substitutions are being put in place BEFORE the change is made, and what are the low hanging fruit with the biggest impact that we should be targeting first. I’m not sure these questions are being asked. It turns out that getting rid of plastic straws has a really big impact on the quality of life and the safety of people with a variety of disabilities. Here’s a wonderful infographic that is getting a lot praise on Twitter.

There are a lot of people who tweet about plastic waste, and the hot new hashtag for this is #WarOnWaste. Several people I know, including several with disabilities, have been responding to these. One in particular has been getting attention lately, a tweet by Elysse Morgan, an Australian news anchor.

I did not read through all the replies to her tweet, which has kind of gone viral in a bad way, but I read a lot of them. They bring up so many issues about how pre-cut foods help to prevent food waste and empower people with disabilities broadly, people in food deserts, amputees, single parents, the elderly, those with fine motor control, reduced upper limb strength, and on and on. A great many issues were brought up, a great many personal stories were told. I collected several of these in a Wakelet collection (Wakelet is the best replacement I’ve found for Storify, but that’s a different blogpost). Here they are if you’d like to scan through them.

Endorsement/Response

Seeking a Middle Ground Between #WarOnWaste and Accessibility (#a11y / #SpoonieLife)

Interested in emerging tech? Check out Cool Toys!

I’ve recently begun to write a few posts for the Michigan IT Newsletter, and will be reposting those here once they are released. This is part of my grand scheme to force myself back into blogging! Life’s crazy, so things are running late. Here’s the first piece I did for them, which was posted at https://michigan.it.umich.edu/news/2017/12/04/cool-toys/


The Cool Toys Conversation group started out as one of the many spaces on campus where people share cool tech they’ve discovered for education, research, clinical care, outreach, and productivity. Since then, it’s evolved to become more of a community of practice around emerging trends and technologies, but without ever completely giving up the original sharing of cool toys. Some of this happens in monthly meetings, usually at noon on the last Tuesday of the month (moving to BlueJeans only in January 2018), some in our email group cooltoysconversations@umich.edu (you may request to be added even if you aren’t part of UMich), and some on social media with the hashtag #cooltoysu. The scope of the resources shared is broad, as fits the scope and range of activities and interests across the university, with some of them focusing on pretty hard core tech and others focusing on links or apps or tech to do something interesting in another topic.

Here are just a few interesting things selected from the hashtag. Highlights include: augmented reality, virtual reality, artificial intelligence, mobile apps, games, and productivity tools.

Seeing AI

Seeing AI is a free app that narrates the world around you. Designed for the low vision community, this research project harnesses the power of AI to describe people, text, and objects.

Mirage

A fun little “photo” app, Mirage allows you to create 3D audio/video/emojis/doodles augmented reality content with your phone. You can also browse other people’s content, but right now, since it’s fairly new, you may not find a lot of content where you are. Here’s a nice introduction to augmented reality from Hackernoon.

The Evolution of Trust

The Evolution of Trust is a clever online game/interactive simulation that explores the mathematics of trust, distrust, and miscommunication through various character types.

Think Check Submit

This online checklist tool helps you choose where to publish your research. In their words: “Sharing research results with the world is key to the progress of your discipline and career. But with so many publications, how can you be sure you can trust a particular journal? Follow this check list to make sure you choose trusted journals for your research.”

Index App

Index touts itself as an alternative to Evernote, or as a one-stop-shop organizational tool. In their words: “Index is the easiest way to capture your ideas. #tag links, notes, files and anything from anywhere, and Index will organize everything into searchable, shareable #collections. Just promise you’ll use it for good and not evil.”

Stigma Barricades Ability: Investing in Ability at UM

Investing in Ability, UMich

I truly cannot express how delighted and proud I am of the University of Michigan, their Council for Disability Concerns, and especially my dear colleague Anna Schnitzer, for their annual hosting of a rich series of events focused on issues at the intersection of disability and ability. This year, the special topic of focus is: “Stigma, Stereotypes, and Bullying.” I will be hosting one of the events (more on that shortly), but I wanted first to introduce the entire series of events, and highlight resources from past events and one of the early events in this year’s series.

Investing in Ability: Main Page: http://ability.umich.edu/iaw/

A text list of events:

2015 INVESTING IN ABILITY: Stigma, Stereotypes, and Bullying

One of this year’s speakers at a previous event, Michigan Supreme Court Justice Richard Bernstein.

Richard Bernstein, Investing in Ability, University of Michigan Oct 21, 2013 https://www.youtube.com/watch?v=X8akD5vLLhA

Investing in Ability events explore stigma, stereotypes and bullying for persons with disabilities.

Now that you know how to find the rest of the events, here are the highlights from one earlier this week, a very passionate and information-rich presentation on the role of Stigma in Muslim Mental-Health, and how that has very real impacts on all of America.

Stigma in Muslim-American Mental Health https://storify.com/pfanderson/stigma-in-muslim-american-mental-health

#ADA25! Tech + Touch + Targets: Part Three, “Are We Done?”

SL15: VAI: ADA25

The first post in this series focused on the White House’s #ADA25 celebration and how high tech can sometimes lead to high touch, improvement of quality of life and connections. In the second post, the focus shifted from the national to the hyper-local, with the new Amtrak technology innovation in Ann Arbor that we hope will impact on rail accessibility nationwide. In this third post, I’d like to introduce you to Virtual Ability, a virtual world space that is home to a global community of persons with all kinds of disabilities

VIRTUAL ABILITY IN SECOND LIFE

Virtual Ability, Inc. (VAI) has, throughout their existence, facilitated access to resources and training for persons with disabilities around the world. This includes personal one-on-one support as well as informational, educational, advocacy and awareness events for their audience. These events engage an international community around disability advocacy. Naturally, the 25th anniversary of the signing of the United States’ Americans with Disabilities Act was not overlooked, with related activities planned for the weeks before and after the actual date. Because of the international nature of their community, events are often scheduled twice, to enable access from different hemispheres.

SL15: VAI: ADA25

Because of the complex range of disabilities supported within their community, information and presentations for their events are offered in text and audio, to support those with or without hearing as well as those with or without sight. This is standard practice for them, and a model that clearly should be adopted for webinars and livestreams and other multimedia online events. What can I say? VAI is ahead of the curve, and committed to doing it right if at all possible. FYI, they used to offer a consulting and testing service to advise organizations providing online content, and providing access to a group of engaged testers with a wide range of access challenges. Very, very valuable.

The VAI events and conversations were hosted and moderated by Gentle Heron, who also provided the voiceover for presentations provided in text.

SL15: VAI: ADA25

For the actual day of the anniversary, VAI offered four events. Two were showings of videos about the ADA then(1) and now(2), with community conversations about them; the other two were formal presentations, one about strategies and resources for personal disaster and crisis preparations (which I hope to blog about as a separate post), and another about the bare bones basics of what persons with disabilities can and should expect (and REQUEST) for accessibility for online content from organizations in the United States, how this varies globally, and why there aren’t any such guidelines for virtual world online content. This last was basically a user’s guide to WCAG, the first presentation I’ve seen like this. Most WCAG presentations are for web developers, instructing them on what to do. It is rare to see a presentation for persons with disabilities explicitly on what WCAG means for them.

SL15: VAI: ADA25SL15: VAI: ADA25
SL15: VAI: ADA25SL15: VAI: ADA25

The question that came up over and over through the day’s events was, “Are we done yet? What’s left?” It’s been 25 years, we’ve come a long ways, but there is still a lot left that needs to happen for true equality and access. Me, in real life, I was listening to these conversations sitting on my couch wearing a t-shirt that said, “Disability Rights ARE Civil Rights.”

#ADA25 TshirtDisability Rights ARE Civil Rights

The conversation was urgent, engaged, informed, and educational. People talked about the need for more accessible modes of transit; new technologies that may help the homebound get out into public life (especially exoskeletons and the Rewalk System, examples of persons with disabilities in leadership roles that influence policy for others; how the United States leadership in disability rights has influenced access and expectations in other countries; the looming cuts to social security income (SSDI) for persons with disability, and the potential impacts (“Many of us are foregoing meds already”). Ironically, the topic of foregoing meds appeared the next day in one of my Twitter chats.

This post focused on #ADA25 in virtual worlds in part because this powerful way of using technology to build community remains drastically undervalued and overlooked. That doesn’t mean there aren’t other ways in which online social spaces are being used to create community, support, and opportunity around these issues. Just take a look at #spoonies, #SpoonieChat, #a11y, #AXSchat, and the #ADA25 hashtag itself. Many of the same issues and concepts brought up in the VAI conversations and events were echoed in the Easter Seals #ADA25 Twitter chat, #ADAtoday.

If any of this intrigues you about the potential for how virtual worlds, online environments, and related technologies can support individuals and communities with disabilities, you might want to also take a look at this recent video describing the VAI community.

#ADA25! Tech + Touch + Targets: Part Two, “Our New Technology”

#ADA25 Amtrak New Accessible Technology #a11y

To continue the series on “what I did for #ADA25,” I’d like to talk about the very exciting event here in town last week, in which Ann Arbor sets the stage for a national high speed rail system, and access for persons with disability is at the core of making this possible.

#ADA25 Amtrak New Accessible Technology #a11y

AMTRAK

The event was the ribbon cutting for the new disability-accessible platform at the Ann Arbor Amtrak station.

“New disability-accessible platform opens at Ann Arbor Amtrak station” http://www.mlive.com/news/ann-arbor/index.ssf/2015/07/new_disability_platform_opens.html

The event started out with the mayor, Chris Taylor, describing the importance of the University of Michigan Health System and hospitals in providing advanced health care to the residents of the State of Michigan, and how critical accessible rail transport is for supporting this.

Lt. Governor Brian Calley noted, “Acceptance & awareness are important, but inclusion is a game changer.”

Richard Bernstein, Judge of the Michigan Supreme Court, waxed eloquent, clearly joyful and delighted with this innovation. You can hear his full remarks on Soundcloud.

Joe McHugh (Amtrak’s Senior Vice President) described this as “the flagship of our new technology,” continuing with the vision and possibilities that would come from this.

Joe really meant technology, too! The new boarding platform is retractable, and extends toward the train when in use. The Amtrak press release describes it as “The platform mechanically extends toward the train, bridging the gap created when a level-boarding platform is needed. This next generation of passenger-focused technology will allow America’s Railroad® to deliver a modern passenger railroad that is accessible to all.” That wasn’t the limit of the tech, either. In addition to designing the platform, the interactive portions of the tech, they also had to design manual tech to support the process in case of problems with the automated portions or for situations that require special extra support.

#ADA25 Amtrak New Accessible Technology #a11y

As with all ribbon-cutting events, the actual story started long long before. Or stories, I should say. This event sprang from the intersection of many stories, many people’s experiences. There are the local folk who fought for a better way to take the train, and helped make people aware of the reasons why it should start HERE. There were wheelchair passengers who complained about being put on a jack, hoisted into mid-air, and left dangling in the rain while the station staff try to get the logistics sorted out. There were the Amtrak staff who helped people with luggage, moms with strollers, elderly folk climbing the narrow stairs into or out of the Amtrak cars.

The story that resonated most powerfully with me was told by Richard Devylder, the U.S. DOT’s Senior Advisor for Accessible Transportation.

#ADA25 Amtrak New Accessible Technology #a11y

Richard was born without arms or legs. The combination of his experience, his intelligence, his connections with the community of persons with disabilities all help to inform his position and influence change. And when the opportunity presents itself, he absolutely will go for the brass ring.

That’s kind of what happened one day a few years ago. Richard described a room full of transportation higher ups. He asked, “Well, do you want to see high speed rail in the United States?” Yes, yes, yes, they all did. The next thing Richard said? “Then you have to find a way to let people like me board the train in less than 15 minutes.” BOOM.

That was one story. He had another good one. Richard described one day when he was trying to get on the train, and a ramp had been set up to allow him to board. But he couldn’t even get on the ramp because it was so crowded with people. Elderly with walkers. Parents with strollers. People with heavy rolling bags of luggage. Part of him thought, “Hey, why are all these people blocking my ramp?” Immediately he realized it is because all of them also needed a ramp, and the one provided for him was the only one there. BOOM #2!

We need ramps for boarding trains absolutely as much as we need curb cuts. The next ADA25 story I’ll be telling is about a group of people in virtual worlds. They were pretty impressed when I told them about this new Amtrak platform. Then they asked, “But why did it take 25 years? And why is there only ONE in the entire United States?” More on that in the next post.

The actual ribbon cutting, with Gary Talbot as the honored local person who pushed the hardest to make this happen.

And then people could board!

#ADA25 Amtrak New Accessible Technology #a11y
#ADA25 Amtrak New Accessible Technology #a11y


Updated to include Gary Talbot’s name.

25th Anniversary of the Americans with Disabilities Act: A Personal Timeline [#ADA25]

ADA 25th Anniversary

The 25th anniversary of the signing into law of the Americans with Disabilities Act is this week. Disability, accessibility, and usability are frequent topics in this blog. I can’t let this pass without a post (despite being rather delinquent with posting since our move into our new library, but more on that another time). But what do I have to offer? There are countless people around the country writing about what has changed since the ADA came into effect, and how much remains to do. There are organizations devoted to #ADA25 with toolkits for organizing your own events. There are celebrations at the White House and most of the state capitals, and beyond. (Resources and links towards the end of this post.) So what can I do? Perhaps just share my own stories of disability experiences in my own life.

MY PERSONAL DISABILITY EXPERIENCE TIMELINE

These are mostly stories from long before the ADA was signed into law. Back then, having a disability was shameful and stigmatized, denied and hidden if at all possible. Accommodations wasn’t even a concept that most people could hold in their mind. The language used to discuss disabilities was stigmatizing and hurtful, at best. You had to have a thick skin. Then, as far as we knew, my family was all able-bodied. We know better now. Several of us in my family have something not quite right with our bodies or minds. I suspect this is true for many families. The families I’ve met with extreme good health are often from cultures where disabilities is still heavily stigmatized, so I’m never quite sure if they are truly as healthy as they say, or if they are also in denial.

Eating sorrel at recess

I was in grade school, probably 2nd grade. There was a red-headed boy with freckles who was new to our class and a lot bigger than everyone else. He had been held back because he couldn’t pass the grade, so he was taking 2nd grade over again. His parents had transferred him to the Catholic school hoping that he’d get more support at a private school than in the public school system. These days we wouldn’t hold the kid back, but would have them tested for a learning disability, get a diagnosis, figure out the accommodations, and design an IEP. No one would play with him. He was new, big, a little scary, and people thought there was something wrong with him. No one was sure what, but they didn’t want to get too close. It was the contagion theory of disability. “Oops! He has cooties! It’s catching!”

I was a victim of the same contagion theory. My brother also had some undiagnosed disability (later discovered to be on the autism spectrum). The other kids wanted to steer clear of him, and by association, me as well. Not every one, and not all the time. Sometimes people would play with me. Not like the red-headed boy. No one EVER played with him. So I took him under my wing. At recess we’d go over to a big tree, sit in the dirt, and talk. I was really smart, and he wasn’t, at least in the same way, but he thought hard about things and had good questions. I’d answer his questions, and I enjoyed playing teacher. One of the things I showed him was the sorrel growing wild in the grass under the tree, that tasted tart and salty at the same time. At the end of the year, he didn’t pass again, and was held back again, or transferred again. I don’t know. I never saw him after that year. 

One leg shorter

A few years later, my family transferred all of us to a public school because we couldn’t afford the fees. In my new class there was a boy who had one leg that was shorter than the other. He’d had polio when he was little, and almost died, I was told. But he didn’t die, it just messed up his leg. Even so, he was taller than me. Quiet. I mean, REALLY quiet. I don’t remember him ever talking without being ordered to. He wore glasses, had dark hair that he wore almost down to his shoulders (which just wasn’t done then), with long bangs that fell over his face. In those days, we wouldn’t have called him disabled, it was just there were things he couldn’t do. He was that little bit ‘different,’ and boy, did he know it! I wanted to talk to him and get to know him (I thought he was kind of cute), but he didn’t talk to anyone.

Smart as a whip, too bad about the wheelchair

There were two Anderson families in my town that had large families. Mine was one, and there was another one. In middle school, I got to meet one of the kids from the other Anderson family. Ken Anderson was in a wheelchair, I didn’t know why. His disability was big and obvious and he couldn’t hide it. He was smart, social, and people liked him. There was never a shortage of folk who would help push his chair. Ken went on to found a student organization for people with “handicaps” (that was the lingo then) at the University of Iowa. It was called Restrict Us Not (RUN). He had a successful accounting career, and founded his own business. Ken died last winter.

Put the pedal to the metal

In high school, Jeff Benson was a year ahead of me. Jeff had also had polio (I’m old enough to remember getting the vaccine on sugar cubes). For him, it wasn’t just one leg, and not just a little. Both legs were effected. He could have used a wheelchair, but I remember him walking with arm braces. Bright, shiny light hair, gritty and determined, and always the life of the party. He was a live wire! He was a drummer for a popular band, and really belted it out. I remember when he got his first set of wheels. At that age, I didn’t know it was possible for people with wheelchairs to drive. I’m not sure anyone in town had seen a car like this before! His parents had the red hotrod modified to use hand brakes, and I remember him waving to his audience, as he’d roar out of the parking lot with the top down. We lost Jeff just a couple months ago.

Hiding in plain sight

In college, one year, I took Italian. It was a small class. The university didn’t allow classes to be taught unless they had a minimum of six students. We managed to barely scrape by with just the required number to allow us to take the class for the full year. There was one young man who was a senior for the second time. He was in engineering, and they wouldn’t allow him to graduate until he had a full year of a foreign language. He had already flunked out of every other foreign language taught at the school, and this was his last chance to graduate. He struggled, but we all helped him along. Towards the end of the year, the rest of us went off to the side and had a conversation. We had all figured out that he had dyslexia. Did he know? Did he know there are resources to help? Should we talk to him about it? Life could be easier, you know! So we did. We brought it up the last day of class. We mentioned that we knew he had to be absolutely brilliant to have gotten along this far with good grades and no one knowing. He completely panicked. He’d been trying to hide it for his entire school career, and was terrified that we would tell someone and he’d never be able to get a job.

Keeping her safe from romance

After college, I worked at the university library. Someone brought in one of the faculty who was blind to talk about how she used information resources. She was brilliant, obviously, sturdy, and with a huge sense of humor, but life wasn’t built for people with visual impairments, and she had no vision at all. How had she gotten through school and become a faculty member? What struck us the most about her story was when she complained that they had no audiobooks of Harlequin romances. She explained that people with disabilities were considered too fragile to have any interest in sex or romance, and so the organizations that would pay to make audio copies of her academic research information needs would not pay for “smut.” A couple of the gals took matters into their own hands and corralled a group of volunteers. We all took a chapter, and recorded a “smutty” romance novel for her.

Closing Thoughts

I could go on. There are many more stories. As the time of the ADA came closer, I have more and more stories of people wanting to learn more and understand about the barriers. After the ADA was signed, I have stories of some incredibly bone-headed things people did in the name of “accommodation.” When I moved here to Ann Arbor, I was initially shocked by the lack of accessibility for the library I was to manage, and how difficult it was to find people on campus aware of web accessibility. We got an elevator for my library, and then we got a campus web accessibility working group. 

First Meeting of the University of Michigan Web Accessibility Interest Group
1pm on Tuesday August 7, 2007, in a meeting room in the School of Public Health.

There is still a lot to do, but we keep trying. Meanwhile, over the years, many if my friends and family have been diagnosed with temporary, chronic, or permanent health issues ofone  sort or another. Disability advocacy started out for me as something I wanted to do for others, because I love to help people. Now it is personal. As I age, it becomes more and more personal. Without the ADA, I probably wouldn’t even have a job. I wouldn’t have been able to get past a few major health hurdles in the past few decades. Because of the protection of the law, I was able to get accommodations and keep working. I hope that what I do will continue to be useful for years to come. 


RESOURCES AND LINKS

ADA Anniversary Toolkit: http://adaanniversary.org/
Proclamation (Organizations & Government Entities)
Pledge for Individuals
Faith Communities
Resources
ADA Information: http://www.adainformation.org/
Quizbook
ADA Legacy Project: http://www.adalegacy.com/ada25
ADA National Network (Great Plains ADA Center): https://adata.org/ada-anniversary
Timeline of the American with Disabilities Act
National ADA Systematic Review
ADA 25 Celebrate: https://www.youtube.com/channel/UCbUCwPT82s4WnKwnc-vEQyw
Disability.gov ADA25 Social Media Toolkit: https://www.disability.gov/newsroom/ada-25-social-media-toolkit/
Smithsonian: EveryBody: An Artifact History of Disability in America: https://everybody.si.edu/
Access to resources often comes through technology
Communication, Transportation, Medicine, War

Hashtags:
#ADA
#ADA25
#DgovADA25

THEN


Senator Harkin Delivers Floor Speech in American Sign Language Upon Passage of the ADA: https://www.youtube.com/watch?v=BomPo6fPOOo

ADA History Playlist: https://www.youtube.com/playlist?list=PLhUAlIEq4gbqCK_3_ls2K2Rtiq6hPumHa

NOW

The ADA at 25: Promise, Progress, Opportunity U.S. Senate Bill Sponsor Hon. Tom Harkin https://www.youtube.com/watch?v=yToAav3qqBU

National Center on Health, Physical Activity and Disability (NCHPAD): Real People, Real Stories: Celebrating 25 Years of the ADA https://www.youtube.com/playlist?list=PLwMObYmlSHaNT-gke7PoQqkc_k22dYqN5


What has changed since the ADA was passed 25 years ago? https://www.youtube.com/watch?v=mW4hB2hcPBM

http://hr.umich.edu/webaccess/
http://chronicle.com/blogs/profhacker/how-to-evaluate-your-web-pages-for-accessibility/60485?cid=wc&utm_source=wc&utm_medium=en