Wednesday, October 17, 2018

Understanding Competing Accessibility Needs

Photo © Steve Guttman | Flickr / Creative Commons
[image: Two small white dogs trying to wrest a red ball from each other's mouths.]
Brooke Winters

Many neurodivergent people struggle with loud noises and are unable to attend events where people clap and cheer. Manchester University Students Union recently made headlines when reps from the union voted to introduce British Sign Language (BSL) clapping at students’ events and encouraged societies and student groups to do the same. The reason for this measure was to make student events more accessible and inclusive.

Predictably, the response on social media was negative, with people claiming that clapping is a human right, that “they’ll be banning breathing next,” and that people who can’t handle noise are weak snowflakes. One of the frequent arguments I encountered against use of BSL clapping was that it would be inaccessible to blind people.

In fact, quiet environments can be inaccessible to many disabled people and policies like this can do as much harm as good, because disabled and neurodivergent people are not a monolith. Disability is complex, and experiences of being disabled are diverse. Different people have different access needs and sometimes those needs are incompatible with each other. As disabled writer Karrie Higgins recently said, sometimes conflicting needs can even exist within the same person.

There are many examples of how we can make things inaccessible to one group by making them accessible to another. A good example is captioning films at the cinema. As an autistic person who is hard of hearing, subtitles make films more accessible to me. Often I am unable to watch movies with captions at the cinema, because even though my local cinema has nine screens, there is only one subtitled film per day: The cinema chooses the most popular one and plays it in the middle of the day. Often I am not interested in this film, and I work during the day. I used to be of the opinion that all films should have open captions. After all, D/deaf and neurodivergent people deserve to watch whatever films are available to hearing and neurotypical people at times that are convenient for us. I had thought that by captioning all films they would be accessible to everyone—but then I read a twitter thread by an autistic, hyperlexic person who explained why subtitles make films inaccessible for her and some other hyperlexic people.

There are many more examples that I can think of from my personal experience alone. My sister is claustrophobic and can’t use lifts. I have fibromyalgia and often can’t use stairs. I have a friend who can only see the cinema screen if we sit right at the front, but this hurts my neck and triggers my fibro. Every summer I joke that my fibro loves the hot weather because my joints hurt less in the sun, but my autism hates it because I have sensory issues.

In autistic communities I think we generally understand that it’s not always possible to make things accessible to everyone. The ways that being autistic affects different people are so diverse, and our access needs can be so different, and often incompatible with each other.

Like many autistic people, I need quiet spaces. I can manage noise for a limited period if I have somewhere quiet to retreat to. Other autistic people can be very loud and need spaces where it’s acceptable for them to make noise. I’ve attended autistic events where organisers did everything in their power to be accessible to as many people as possible, but in doing so made it inaccessible for me. For example, at one event the feedback from the microphone was causing people a lot of pain so the speaker switched it off. I’m agoraphobic and needed to sit at the back and could no longer hear what was being said. At another, the lighting was dim to accommodate people who are sensitive to bright lights and, being visually impaired, I could not see anything.

I think it’s just about impossible to make one event accessible to all autistic people (although I hope we keep trying and improving). When I think about one of my favourite pasttimes, going to the theatre, I can’t help but think about how the theatre is inaccessible to many neurodivergent people, but sometimes in different ways. As someone who is sensitive to noise, I can struggle with the clapping and cheering that takes place throughout performances. I find it easier to go to the cinema where, except for the occasional conversation and rustling of sweets wrappers, it’s mostly quiet. I also have friends who struggle at the theatre because they have verbal tics and it’s generally not acceptable to make noise, outside of clapping and cheering, at the theatre. In fact, one autistic woman, Tamsin Parker, was removed from a cinema recently for laughing too loudly. There are relaxed performances, where it’s acceptable to make noise and move around, but these are generally aimed at children.

The argument that BSL applause would make events inaccessible to blind people was a red herring, a way for people to justify their ableism. Many of the people who made this argument probably never thought about how it takes more than applause to make the visual parts of a performance or event accessible to blind people. Often blind people can’t attend events because there is no audio description, and I imagine the same people who complained about BSL clapping would moan if a blind person had their friend describe what was happening during events or performances. Most of these people have probably never considered that people can be blind, deaf, and autistic, or any combination of the three, and that for those of us who are, accessibility is a balancing act.

Accessibility is difficult and it’s complex but that doesn’t mean that we shouldn’t bother with it. In a recent survey conducted by Autistic Not Weird, over 75% of autistic people said that they felt socially isolated. I was not surprised by this at all. We live in a world where most events are not accessible to us and when steps are taken to improve accessibility there’s a backlash. Of course, that results in us feeling isolated, and in turn that probably affects the higher rate of mental illness and suicide among autistic people.

It’s vital that every disabled and neurodivergent person can attend events that are accessible to them. Accessibility is too important for us to ignore just because it can be difficult or unpopular. We also can't choose one group and decide to make everything accessible to them, and inaccessible to other people. It’s not acceptable to sacrifice one group of disabled people for another, nor is it necessary.

It may not be possible to make every single event accessible to every disabled person but there are steps we can take to make sure that every disabled person has events that are accessible to them. For example, rather than making every film at the cinema captioned, we could have a fifty-fifty split, with all films, captioned and uncaptioned, being available at various times of the day. It’s also important that there are events where people can make noise, and events where people can expect it to be relatively quiet and free from sudden noises. It’s important that the type of applause we use is accessible to the performer or speaker, so if that person is blind in most cases it would be inappropriate to use BSL. If the performer is D/deaf or if clapping and cheering would likely cause them distress, BSL is likely to be more appropriate.

The idea of making something fully accessible is attractive and I have come across policies (often but not always written by abled people) that aim to create inclusive and accessible environments by being prescriptive about what accessibility is. The intention is usually good, but the outcome is often that some disabled people have their needs and experiences erased. In the worst case scenarios this can result in the policies being weaponised against neurodivergent and disabled people who don’t fit into people’s idea of disability.

Blanket rules for all events ignore the different access needs of disabled people and can be used to harass, bully and exclude disabled people, which is the opposite of its intended purpose. There is no such thing as fully accessible, but what we can strive for is a world in which everyone’s needs are acknowledged, accepted, and catered to. And that begins with listening to disabled people.

Thursday, September 27, 2018

Neurodiverse-Friendly Workplaces in Your Community: A Symposium Report

Photo courtesy Max Sparrow
[image: Symposium organizers and presenters stand in front of the Dirt Coffee
Truck while the Dirt workers smile from the left window of the truck.
From left to right, the people pictured are: Dr. Elaine Meyer, Bill Morris,
Lauren Burgess, Kris Harrington, Drew Webster, Dr. Stephen Shore,
Dr. Kristie Koenig, Thomas Koenig, David Finch, Becca Lory Hector,
Philip Tedeschi, Antonio Hector, Erica Elvove.]

Maxfield Sparrow

I am sitting in Dirt Coffee in Littleton, Colorado. Ryan, an outgoing young woman with enormous blue eyes, has served me a massive Americano to which I’ve added tons of cream. “Do you know about our mission?” she asks me.

I do know the mission of Dirt Coffee, but I let her tell me anyway because I want the joy of hearing the words again.  I discovered Dirt Coffee earlier today when I attended a symposium at the University of Denver’s Graduate School of Social Work where I heard heartening words about local workplaces that are making the effort to create friendly, inclusive environments for their neurodivergent workers.

The symposium, which ran from nine in the morning until half past eleven on Friday, September 21st, 2018 (after which many of us retired to the excellent mediterranean restaurant across the street to continue networking and sharing information), was sponsored by Colorado’s Center for Neurodiversity and The University of Denver Institute for Human-Animal Connection.  The headliners were Dr. Stephen Mark Shore of Adelphi University in New York and Dr. Kristie Patten Koenig of NYU. The two joined an impressive panel with Philip Tedeschi of the Institute for Animal-Human Connection, Lauren Burgess, founder of DIRT Coffee, and Bill Morris, the CEO and director of Blue Star Recyclers.

First, however, Becca Lory Hector, the Director of Communications/Program Design and Admin at the Center for Neurodiversity, spoke, setting the tone for the event by talking about the importance of community and thanking everyone for taking the time to change the conversation around neurodiversity because we can do so much better than we are. Then the host and moderator, David Finch, author of The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband and second-season consultant for the Netflix show Atypical, got the audience laughing by sprinkling jokes through his introductions of the panel members.

Dr. Stephen Shore opened his presentation by talking about central coherence and hyperfocusing. This autistic trait is often framed as a negative “symptom” of an “illness,” but Dr. Shore demonstrated why that is an erroneous way to view such a core aspect of how our brains work. He put up two photos of the same carousel and asked the audience to find ten or eleven tiny differences between the two photos. My friend Dennis Mashue, seated next to me, cracked me up by saying, “the top box is labelled number one and the bottom box is labelled number two.” I shot him a look and he shrugged, “At lunch yesterday Stephen said we should all think outside the box.”

We found a few differences, and then Dr. Shore revealed all the rest of the differences to us. Then he removed the photos from the screen and asked us: what was this a picture of? What animal was in the foreground? What color is the animal behind the first one? How many animals are in the row closest to us? We could only answer the first two questions because the exercise had forced us to focus on the details so much that we missed seeing much of the big picture. Dr. Shore explained that we had just engaged in an autistic thinking style and asked us: Since neurotypical people are usually better at seeing the big picture, does that mean they have a deficit of detail-oriented observation?

Of course that’s not the case. Our society does not generally view the ways a majority of people view things as deficits. Dr. Shore clearly demonstrated that focusing on details is not a deficit, simply a different way of engaging with the world—in fact, it is a way of engaging that can have a lot of benefits. Dr. Shore asked the audience to name some tasks that benefit from detail-oriented thinking. Audience members called out: coding, film production, reading knitting charts, technical editing. Being detail-oriented, as well as many other autistic traits, are labeled as deficits or deficiencies, but Dr. Shore implored us to instead look at autism and other neurodivergences as presenting challenges, but stressed the importance of focusing on strengths when considering autistic people.

Instead of thinking of autism as deficits in communication, socialization, and restricted interests, Dr. Shore told us, we should be focusing on possible areas of success by looking at how an autistic person prefers to spend most of their time. What are their abilities? What are their interests? (Dr. Shore interchangeably used the term “special interest” and “focused interest.” I’ve been fumbling for a better phrase than “special interest” because I don’t like using the word “special” to describe aspects of autism or other developmental disabilities. I really like “focused interest” a lot as an accurate, non-pathologizing term.)

Another question Dr. Shore recommended for those seeking to help an autistic person find their areas of employment success was: What kind of mind does the person have? To illustrate the last concept, he asked the audience if they knew what kind of mind autistics have, asking, “is it a visual mind?” Dr. Shore was pleased to see that no one raised their hand and explained that, while many, perhaps most, autistics are visual thinkers, others are so much the opposite they can’t even read a map. It was a caution against stereotyping the entire body of autistic people as having one particular type of thinking or the same learning needs. I particularly appreciated Dr. Shore making this point because I am not much of a visual thinker. I can mostly read a map but that’s the summit of my abilities.

Dr. Shore talked about the “three As” of autism: awareness, acceptance, and appreciation. He said that organizations have done a pretty good job of awareness and explained that acceptance does not mean just giving up on a person and their future but rather viewing autistic people as whole and valuable human beings who do not need to be eliminated, cured, or made to look and sound like everybody else. Appreciation, of course, would be a natural result of reframing how society views autistic people, using an abilities-based model to help channel people into employment that suits them, and seeing society’s benefits, the results of including neurodiverse people in the workforce.

Dr. Shore mentioned a Los Angeles organization called Autism Works Now and the Glorious Pie business that has come out of it. While the page has some language that does not match Dr. Shore’s message (e.g. “Larry King’s fight against autism”) the organization overall appears to be doing a lot of good work in helping autistic people find jobs, and helping employers understand why autistic people make great employees.

This was my first time seeing Dr. Shore speak and I am a huge fan now. I admit that I was worried about what he might say since he is on the board of Autism Speaks and most people familiar with my writing already know that I do not like Autism Speaks. But after hearing what Dr. Shore had to say, I am grateful that he is working with Autism Speaks and hope that his message of acceptance, focusing on strengths, and inclusion are influencing the organization in positive, helpful ways. I unreservedly recommend Dr. Shore’s work as he is so clearly a force for good in our community and in the world.

After Dr. Shore spoke, his close colleague and friend of many years, Dr. Koenig, spoke about the difference between equality and equity. She showed a slide of four people who each got a bicycle. The bicycles were all the same: it was equal and ‘fair.’ But one person couldn’t use their bicycle because they were a wheelchair user who didn’t have leg strength to use the pedals. Another was too tall to use the bicycle and a third was far too short. Only one person could enjoy the bicycles—not fair at all!

But in the next slide the short person had a smaller bicycle, the tall person had a bigger bicycle, and the person who uses a wheelchair had a hand-pedaled quad bicycle. When all the bicycles were the same only 25% of the users were able to enjoy the bicycles. When each bicycle was different, to accommodate for the differences between riders, 100% of the users were able to enjoy the bicycles and instead of being merely equal, there was actual equity.

Dr. Koenig used this example to illustrate an important consideration: individuals know what they need. Professionals should listen to people explaining their needs rather than assuming they can just figure out people’s needs and fill them with no input from those who will have to live with those professionals’ choices.

In addition to speaking, Dr. Koenig showed some film clips. One clip said that neurodiversity is as important for the human race as biodiversity is for life itself. She also showed a clip of the actor Benedict Cumberbatch in The Imitation Game, a film about genius mathematician Alan Turing. (Turing was quite likely neurodivergent, possibly autistic.) Dr. Koenig showed a clip in which Turing was very literally interpreting what his colleagues said, and she talked about how Autistic people can leave others feeling as if they are rude or irritating because of the differences in how we communicate.

Dr. Koenig also pointed out that whenever businesses support neurodiversity in their workforce they see an increase in productivity and profit as a result. The diverse strengths, skills, and abilities autistic people have mean that matching autistic minds to the best fitting trajectory will not only be transformative for us but also for the employing workplace and for society at large.

After Dr. Koenig spoke, David Finch began asking questions of the entire panel. Sometimes I could tell who was saying what, but not always because I was sitting in the back. Here are some of the things people talked about:

We have to force inclusion. It will not happen naturally. But we can force inclusion in powerful and compassionate ways. One panel member suggested that a Christian model might call that sort of forced inclusion “grace.”

Communication is very important. Many people type to communicate, and we have to keep offering that option (as well as other forms of communication beyond speech) to everyone to keep communication channels as open as possible. Most people tend to be lazy communicators so we need to help autistic people with the tools to engage in communication as much as wanted/needed.

Small talk is virtually useless, but people engage in it anyway. How long does it take to genuinely check in with someone? If we think that extra time is a burden we need to re-think. A work environment that is humane and inclusive is also economically valuable. Companies will want to choose humane communities and look for strong inclusive values and attitudes plus policies in place to support those values. Building accepting communities helps everyone. There is research supporting this but it’s hard to briefly cite because it’s multi-disciplinary and you have to integrate findings from many places to come to these conclusions. (Note from Max: I hope some academics do that integrating work, write down the results, and publish. I’d jump at the chance to read and write about that research!)

Someone (I think it was Dr. Koenig) mentioned the importance of authentic autistic involvement in all research about us and our lives. In that vein, they recommended PARC: The Participatory Autism Research Collective.

Lauren Burgess talked about the DIRT coffee shop she founded in 2013, its mission to employ neurodiverse people, and their internship program and education. More than once Burgess mentioned that neurotypical employees routinely required more training and more supports (like visual aids) than the neurodiverse employees. Burgess told a story about an employee who developed a highly efficient way to do inventory. Burgess mentored him by suggesting he train all the other employees in his system. He wrote detailed instructions in an email and now everyone uses his system.

David Finch responded that one mentor can put everything on track for an autistic worker by suggesting things (like taking a leadership role) that might not have occurred to the autistic person.

Bill Morris talked about his business, Blue Star Recycling. He talked about his early struggles when he was first promoted to management in his twenties and learned “Be the kind of boss you’d like to work for.” As a result, he runs his business that way. His employees are neurodiverse—from entry-level employees to management. Morris praised the strengths of the autistic people working in his business, and said that the attention to detail was perfect for the work they do: dismantling old electronics so the parts can be reused in other devices and projects.

Finally Dr. Elaine Meyer , who was in the audience, spoke about a press release issued earlier this month, announcing that Harvard’s Center for Bioethics will be collaborating with Colorado’s Center for Neurodiversity in studying issues surrounding “ethics, human rights and neurodiverse qualities of life.” The press release states the goals and aspirations of this collaboration are, “expected to evolve and, most importantly, be responsive to the priorities and needs of a neurodiverse population. There will be an emphasis on joint projects including conferences serving academic and lay audiences; innovative educational offerings such as webinars and simulation-enhanced learning opportunities; a range of scholarship; media presence; and timely policy statements. It is anticipated that the Center for Neurodiversity may serve as a placement for the Master of Bioethics students to fulfill their year-long Capstone Project requirements, culminating in scientific poster sessions and scholarly publications.”

Overall, the symposium was very upbeat and positive. Attendance was good, and many people raised their hands when asked how many were neurotypical (NT) professionals who work with autistic people. Hopefully the information everyone shared will help professionals and employers better serve autistic adults, and make a significant dent in the distressingly high unemployment rate autistic workers face.

Later, at Dirt Coffee, Ryan mentioned that high unemployment rate. I asked for the WiFi password and it turned out to be a variation on the statistic of 90%. “Do you know why that’s our password?” Ryan asked me, looking genuinely eager to tell me the answer.

“Why?” I was genuinely curious to hear the answer. I had instantly liked Ryan. She is authentically friendly and made me feel welcome from the moment I walked in the door.

“Because 90% of people on the spectrum are unemployed or underemployed,” she told me.

The statistic I’ve always seen is 85% so I have no problem accepting that Dirt Coffee found a source citing 90%. What an important WiFi password, and opportunity for education.

Companies like Dirt Coffee and Blue Star Recycling, academics and researchers, writers and advocates, parents, adult autistics, and more are all working toward a brighter future for autistic adults. It was so uplifting to hear words of hope and progress at the symposium and so comforting to end my day at a coffee house that loves and values my neurotribe. We live in uncertain times. I am reassured when I see so many people working so hard toward so much good.