Here is a good opportunity for audio describers to help the development of audio description and promote his or her work. Let us all participate!
The University of Westminster is collaborating with VocalEyes and Louise Fryer, UK, to evaluate the use of Audio Description in Museums. Very little research has been carried out to explore Museum AD, and what might make for an enjoyable, immersive and memorable experience. Through evaluation of these factors, the research will consider the potential for AD to enhance the experience of sighted people also, thereby exploring AD as a tool for inclusive design.
There are many aspects of Museum AD that this project could evaluate; the question is, which are the most important, and why. To this end, we are seeking the views and experiences of practitioners to help identify where the project research effort and resources should be focused.
This survey is being distributed globally, with the aim that methodologies and opinions on Museum AD will be gathered from describers around the world, and then shared within the AD community.
There is the option to include your email address in the survey if you would like to receive a summary of the research findings when complete.
University of Westminster
This week saw the publication of the second opus-length autism history from a major publisher in the past year. Just as the autism world was beginning to absorb the bombshell of Steve Silberman’s NeuroTribes, published in August, Caren Zucker and John Donvan released In a Different Key.
As both an autistic person and someone who spends his days working on autism and disability policy, I’m fairly familiar with the history of autism (and am a minor character in each book). But both contain surprising new revelations.
Two books, two approaches
Silberman made his name as a reporter for Wired magazine. Something of a lifetime outsider, he moved to San Francisco in the late ’70s so that he could live “a gay life without fear.” In many occasions throughout his book, his experiences as a gay man support how he tells the story of the autistic community.
Perhaps more than any other non-autistic writer to date, he understands the unique frustrations so many autistic persons feel watching a core aspect of our lives presented to the public as a burden and public health risk. While there are obviously major differences between autism and LGBTQ issues — autism often encompasses more significant impairment, obviously — there are also real commonalities, which Silberman highlights. Both groups contend with public disputes over the essential nature of our conditions, whether they can be corrected by behavioral or biomedical approaches, and whether we should be considered reliable narrators of our own experiences.
Silberman’s background shines through especially poignantly in the parts of autism history that intersect with LGBTQ issues. Nowhere does this come through more so than in the chapters on Ivar Lovaas — father of the most popular modern autism intervention, applied behavioral analysis — who in addition to attempting to “recover” autistic children through brutal means, led with George Rekers the infamous UCLA Feminine Boys Project, endeavoring to do the same for young children deemed “at risk” for homosexuality.
Silberman’s book also covers more than a century of autism history, indicting some of the reputed giants of the autism world — not just Lovaas but also Leo Kanner and Bernie Rimland.
It reveals for the first time evidence that Kanner, popularly considered the discoverer of autism, took much of the underlying work from Hans Asperger, whose Jewish chief diagnostician, George Frankl, Kanner helped saved from the Nazis and would later employ and learn from.
Prior to the publication of the book, most historians considered Kanner and Asperger’s discovery of autism to be nearly simultaneous and the result of independent research by each. Kanner’s friends and defenders maintained throughout his life that he had never read Asperger’s work, a dubious claim in light of the discovery of the Georg Frankl connection.
This matters in part because, as Silberman documents, Kanner laid out an overly narrow understanding of the autism spectrum, in contrast to the more inclusive vision of Asperger and Frankl’s work. Kanner, who is correctly identified in the book as an original source of the discredited idea that parents were at fault for their child’s autism, is described within NeuroTribes as acting to emphasize the rarity of the condition he identified, in part so its discovery could be credited as unique to him.
Silberman displays rare empathy for the autistic people in his narrative, describing both nonverbal teenagers and eloquent activists with a deep respect and complex characterization. The book highlights the horrifying impact of the Nazi euthanasia program and the American eugenics movement alike, and accurately ties the wide-scale institutionalization of disabled Americans to the eugenics project. Even people without a background in the autism world will be fascinated to learn about Bill Sackter, a man with an intellectual disability whose friendship with filmmaker Barry Morrow led to the movieRain Man.
While Sackter had been institutionalized as a child as a “burden on society” and faced horrific abuse till he left for life in the community, Rain Man ended with the autistic character being returned to institutional life. Silberman identifies this as the influence of Bernie Rimland, one of the leading parent advocates of the time and an ardent defender of both institutionalization and the later discredited theory that autism was caused by vaccination.
If Silberman’s NeuroTribes serves as an indictment of the past 50 years of autism history, Zucker and Donvan have appointed themselves as passionate counsel for the defense.
The authors of each book could not be more different in the life experience they bring. Donvan and Zucker both have autistic relatives, and Zucker has reported on autism from that perspective for some time, serving as producer of the PBS NewsHour Autism Nowseries in 2011.
NeuroTribes and In a Different Key clash most directly in their characterizations of Kanner and Asperger, the two figures associated with the beginning of autism history. In a Different Key presents Kanner as a much more sympathetic figure and does not include any information on Georg Frankl. It also presents Asperger as a Nazi collaborator. To date, the evidence on this question has not yet been made available to the public (Zucker and Donvan’s source, a scholar from Vienna, declined to provide his archival material to Silberman and other researchers), but it raises concerning questions that should certainly be explored in more detail.
Parental advocacy has been important
He had never really cried for her, never fixed his gaze on her and shared a moment of tenderness. Not once during this ride would he look up at her and smile. … That was the hardest thing for Mary — Donald’s utter emotional indifference to her presence.
The passage hints at an automatic empathy for parents that persists throughout the text. At times this is an asset, though it frequently leaves the book curiously ill-equipped to understand or accurately reflect the criticisms of the autism parent movement from the growing autistic adult community.
This reflexive sympathy becomes more concerning as the book goes on. On page 142, the authors recount a disturbing amount of justification for the murder of Dougie Gibson, a 13-year-old autistic boy killed by his father. The book characterizes the death in terms of a mercy killing, a common narrative adopted by a media quick to presume that it is not the deaths but the lives of disabled children that represent a tragedy.
In a Different Key acknowledges no stakeholder more important than parents of autistic children. And certainly parents are important. Both books reflect the extraordinarily impactful role parent advocacy played in securing educational access and debunking the immensely damaging “refrigerator mother” theory, popularized by Dr. Bruno Bettelheim, that libeled parents as the cause of their children’s diagnosis.
But autism happens to autistic people, not their parents
The unique cognitive and sensory profile associated with the diagnosis, the communication challenges, and the sense of alienation from mainstream society that struggles to understand us are all autistic experiences, not parent ones.
A decade ago, when the autistic self-advocacy movement was just beginning to enter the realm of politics, many of the early autistic activists and bloggers organized around the sense that parent leaders were writing us out of our own stories.
At the time, autism parent advocacy was particularly brutal. In 2003, the head of the Autism Society of Canada testified to the Canadian Senate, “Autism is worse than cancer in many ways, because the person with autism has a normal lifespan. The problem is with you for a lifetime.”
This was not an opinion grounded only in hyperbole — only seven years earlier, the Autism Society of Montreal had come to the defense of Danielle Blais, a mother who had drowned her 6-year old autistic son, Charles-Antoine Blais, in the bathtub. Autism Society officials took up a collection for Ms. Blais, testified for her in court, and ultimately ensured that she would serve no jail time and would enter the organization’s employ as an official representative.
Throughout the 1990s and early 2000s, disability rights advocates tried and failed to convince the Autism Society of America to prohibit the Judge Rotenberg Center — a facility in Canton, Massachusetts, infamous for using electric shock devices on children with disabilities as a means of pain-based behavior modification — from exhibiting at its conference. ASA refused to turn away JRC for years, citing the organization’s “options policy” affirming the right of parents to select virtually any intervention for their child.
At the Association for Behavioral Analysis International, the major trade association for applied behavioral analysis providers, JRC was an exhibitor and conference sponsor as recently as 2015, at the same time as it was under investigation from the Food and Drug Administration, the United States Department of Justice, and the United Nations special rapporteur on torture.
In the words of one parent advocate writing in the Washington Post in 2006, “Because autistic kids don’t much notice or care about the outside world, autism actually ‘happens’ to the sentient human beings around them.” And to these uncaring, nonsentient beings, all things could occur.
We have made progress since those days. Parental narratives are still more common, given the comparably privileged economic position and communication skills well-heeled leaders of many national autism parent organizations enjoy.
But more people are recognizing that parent voices are only a part of understanding autism — and when they refuse to cede space for autistic adults to tell their story, they can actually make the lives of autistic people (of all ages) worse.
The neurodiversity movement
This was the point that Jim Sinclair set out to make in a seminal 1993 conference presentation that kicked off what would become the neurodiversity movement. They (Sinclair is intersex) said, “When parents say, ‘I wish my child did not have autism’ what they’re really saying is, ‘I wish the autistic child I have did not exist.’”
Donvan and Zucker disapprove of these seemingly harsh remarks to parents. “Sinclair was not a father,” they chide, and call it “jarringly reminiscent of Bruno Bettelheim’s discredited claim from the 1960s that mothers harbored a secret wish ‘that it would be much better if the child wouldn’t live’, thus causing autism in their children.”
But it unquestionably resonated with countless autistic people across the globe. The modern autistic adult community is built on the ideas that Sinclair promoted to such controversy all those years ago. Those words captured how a rising generation of autistic people felt about the unfolding conversation about autism going on “about us, without us.”
In 10 years of advocacy within that movement, I can attest that the bulk of the work I and my colleagues do is about expanding services and making more support available for autistic people and our families.
We work very closely with parent and provider groups that share our values, including the largest and most mainstream entities in the intellectual disability and Down syndrome advocacy movements, which have moved away from the fear and pity tactics that distorted autism advocacy.
Nor does the neurodiversity movement “argue that autism is not essentially a disability,” as Donvan and Zucker described us in Smithsonian Magazine this month. Actually, the very first piece of legislation the Autistic Self Advocacy Network worked on when I came to Washington was the ADA Amendments Act of 2008, which affirmed that autism qualified for disability rights protections under federal law.
Unlike the deaf culture movement, for example, autistic activists see no contradiction between being part of the disability community and believing that there are more important goals for treatment and services than “normalcy.”
However, the neurodiversity movement has serious concerns on the current state of the autism research agenda. The National Institutes of Health devoted only 2.4 percent of its autism research budget to improving services for autistic people across the lifespan and only 1.5 percent toward adult issues. (That’s according to the Interagency Autism Coordinating Committee [IACC], the federal advisory committee tasked with advising the government on autism policy, in 2010.)
Working toward any parity on investing in the needs of autistic people today will be a generational project, and that’s to say nothing of putting safeguards on research with concerning future applications.
Despite that, In a Different Key presents the neurodiversity movement as a grave threat to autism research’s future. Activists should be able to question the priorities of the current research agenda without being presented as against investing in autism science altogether.
When “therapy” is actually abuse
Neurodiversity tries to hold the autism parent and provider worlds accountable for promoting therapies that have often crossed the line from assistance into abuse.
In the name of cure and attempting to “recover” autistic children, extraordinary abuses have been and continue to be inflicted on autistic children.
Ivar Lovaas (who In a Different Key quotes referring to autistic children as “little monsters … [with] hair, a nose and a mouth —but they are not people in the psychological sense”) was willing to inflict extraordinary abuse on those under his care. As both books recount, Lovaas was unapologetic about his methods, publishing pictures of his staff slapping children in a glowing 1965 Life Magazine profile called “Screams, Slaps & Love.”
Today autistic children are less likely to receive such draconian treatment (though it is still not unheard of), but they are often victims of smaller, more intimate abuses.
Modern applied behavioral analysis providers frequently focus on training autistic children to imitate the trappings of normalcy: eye contact, holding still rather than rocking back and forth, maintaining “quiet hands” rather than flapping and other self-stimulatory (“stimming”) behavior.
Their methods range from the neutral to the horrifying, but few are given the training or conceptual framework to question their goals. Eye contact or repressing stimming behavior can be distracting and stressful, depriving an autistic child or adult of the energy and focus necessary for academics.
Is it productive to teach a child to sit still and make eye contact if in doing so he is less able to pay attention to the conversation he’s listening to? We have a saying in the autistic community — “I can look like I’m paying attention to you, or I can actually pay attention to you.”
Many unusual autistic behaviors are important and adaptive in nature. Hand flapping, rocking, and other forms of stimming serve as important means of emotional and sensory regulation for autistic children. For that matter, there are real consequences to being taught from a young age that the way you move and interact is irretrievably wrong. Autistic adults often report lasting trauma associated with childhood experiences with behavioral interventions.
(In 2012, the Autistic Self Advocacy Network published the anthology Loud Hands: Autistic People, Speaking, collected writings from autistic adults about such experiences — the title we chose was a subversive play on the common “quiet hands” command to avoid stimming in special education classrooms.)
These interventions are often delivered in self-contained, clinical environments, depriving autistic children of valuable class or community time that might better allow them to access the general education curriculum or more fully experience family life.
To their credit, Donvan and Zucker do acknowledge Lovaas’s reprehensible use of pain as a means of behavior modification. But they seek to swiftly divorce it from modern applied behavioral analysis, which is presented as having little to do with its early incarnations.
This is not borne out by the research. A 2008 study published in the Journal of Positive Behavior Interventions surveyed leading experts in the applied behavioral analysis field and found that 26 percent view contingent electric shock as an acceptable treatment methodology, 43 percent viewed physical punishment as acceptable, and 34 percent viewed sensory punishment as acceptable.
Does this mean that every therapist who offers families support is a modern-day Marquis de Sade? Of course not. Even the most radical of autistic and neurodiversity activists support some form of early service provision for autistic children. Some, like myself, benefited as children from more wholesome approaches to educating autistic kids, like speech and occupational therapy. Others had positive experiences with progressive providers of all kinds, including some who come from behaviorist backgrounds.
Most of the Autistic Self Advocacy Network’s work is about advocating for expanding the availability of services, to assist families who might otherwise face significant costs in accessing them.
But the days of pain disguised as treatment are by no means over. The Association for Behavior Analysis International still articulates protocols for and defends the use of aversives, contingent food programs, seclusion, and planned restraint as a form of treatment (as distinguished from its emergency use to prevent imminent risk of harm). Disabled children — especially autistic ones — are subject to abysmally poor standards of ethics and human rights by many providers.
I recall being told by an FDA official some years ago, when we approached the agency to ask for a ban on the Judge Rotenberg Center’s contingent electric shock device, that we should first consider research randomly assigning children between contingent shock and positive educational methods, to see who had the best outcome. I somehow refrained from asking if he planned to volunteer for that particularly joyful experiment.
Different standards for autistic and non-autistic people
At times, I cannot help but feel that Zucker and Donvan hold autistic people to a higher standard of interpersonal behavior than they do their non-autistic protagonists. Lovaas, who overall is one of In a Different Key’s heroes, is described as “entertainingly reckless in the language he used to dismiss anyone who questioned his research methods or findings.” These traits are seen as charming quirks that only strengthen Lovaas’s role as one of the book’s central protagonists.
In contrast, the authors paint a very different picture of a 2009 exchange I had with Elizabeth Bell, an activist and the wife of Peter Bell, Autism Speaks’ then–executive vice president, at a public forum. Both Elizabeth and Peter Bell have been ardent critics of the overwhelming scientific consensus that autism is not caused by vaccination. They have also been two of the leading voices in the cure movement since the 1990s. I respect their passion but disagree with their views on both the nature of autism and the appropriate agenda for autism research.
…His determination and his integrity as a campaigner were unassailable. He refused to mince words, fudge facts, or make plays for the affection of his audience. Even face-to-face with an autism mom, whose total love for her child and despair over his future should have been evidence, Ne’eman was unyielding. He did not flinch, offer empathy, or soften his tone. Experiencing that, Bell went home thinking that people who still seriously doubted that Ne’eman had true autistic impairments were wrong. The total imperviousness she had witnessed appeared to her to reflect not simply Ne’eman’s convictions, but also an inability to take on a point of view other than his own. This, she knew, was considered a classic autistic trait —one that Simon Baron-Cohen had referred to as “mindblindness.”
I can’t speak to what empathy I did or did not offer Elizabeth Bell in July 2009. If memory serves, the exchange was a polite disagreement, one of many I have had with Autism Speaks’ leaders over many years.
But reading the description of the exchange, I’m left with a feeling that Bell, and, by extension, the authors who carry her words, feels a strange sense of entitlement to define the public conversation on autism without interference from autistic voices.
They seem almost scandalized that someone is disagreeing with them in public.
One is left with the impression that an autistic person expressing a strong contrary opinion is mind-blind, whereas a researcher or parent who does so is merely passionate.
The neurodiversity movement cannot be ignored
I would be remiss if I let my personal distaste for how Zucker and Donvan characterize my community get in the way of acknowledging that their book is a part of a promising trend of growing interest in the history of autism and autistic people. In a Different Key does have a few unique gems, not all of which made it into the generally superior NeuroTribes. I learned a great deal about many admirable leaders in the parent movement who played an integral role in the fight to open up public schools, to whom I — who benefited from special education services as a child — owe a vast debt.
And while Zucker and Donvan wear their allegiances on their sleeve, I can hardly fault them for doing so, as I certainly do the same. Like Autism Speaks, the National Autism Association, and other parent groups associated with the cure perspective, Zucker and Donvan are capable messengers of a very particular perspective in the autism world.
It is not my perspective — but unlike a decade ago, it can no longer pretend to be the only one in the autism conversation.
Patronized to and disliked though we may be, the neurodiversity movement’s presence inIn a Different Key is indisputable. The members of the parent culture that dominated the public vision of autism with an exclusive focus on young children and a cure are awakening to a reality in which they must share power with autistic advocates and the growing number of parent and professional allies of the neurodiversity movement. Yesterday, they ignored us, today they laugh at and fight with us, but tomorrow? We will just have to see.
Ari Ne’eman is the president of the Autistic Self Advocacy Network and served as one of President Obama’s appointees to the National Council on Disability from 2010 to 2015.
At first blush, Paul Demeyer‘s office in Burbank is what you might expect for any animation director. The walls are decorated with prints of Disney’s classic “Pinocchio” and images from the film “Rugrats in Paris: The Movie,” which he directed. There’s a plastic toy ostrich character from his latest show, the top-rated TV series “Miles From Tomorrowland.”
But the office also offers subtle clues that something is different: the large magnifying glass in a pen holder, the small telescope, usually fastened around Demeyer’s neck.
The 62-year-old Belgian director uses the magnifying glass to help him see small or especially detailed images. The telescope zooms in on scenes he can’t make out on a screen. He can’t see well enough to drive. In a crowd, faces sometimes appear as impressionistic paintings. Colleagues have to keep the aisles clear so he won’t trip over boxes.
Demeyer suffers from diabetic retinopathy, a disease that causes damage to the blood vessels in the retina and is a leading cause of blindness in American adults. He came close to losing his sight completely; today, he’s legally blind in one eye and has no peripheral vision.
Demeyer describes his world as “life through a keyhole.” But he has managed to defy the odds, forging a successful career in Hollywood as an award-winning director of animated movies and TV shows.
“I always tell people if they knew what I see, they wouldn’t give me the job I have,” said Demeyer, a soft-spoken man with a boyish face and an impish smile.
But Demeyer says his disability has actually made him a better director. “The narrowing of my view,” he said, “has made me look at the broader picture.”
Twenty-five years ago, Demeyer’s career was taking off. He was living in London and animating commercials for TV and had just finished a short animated movie.
He was reading a book on the subway when he noticed he couldn’t make out the words — a sentence he was trying to read appeared as a big black line.
The sense of beauty we get though the eyes is something I always relied on for drawing and painting … It was like the rug under my feet was being pulled away.
— Paul Demeyer
He visited an ophthalmologist, who gave him the bad news that he had advanced diabetic retinopathy in the left eye. Blood vessels in his eye were bleeding, clouding his vision.
Demeyer had been diagnosed with diabetes as a boy growing up in the Belgian city of Bruges and had learned to live with daily insulin injections and watching his diet. For someone whose career was in the visual arts, it was a particularly alarming complication.
“The sense of beauty we get though the eyes is something I always relied on for drawing and painting,” he said. “It was like the rug under my feet was being pulled away.”
He needed immediate laser treatment to stop the bleeding. After the treatment, the vision problems persisted and his right eye began to hemorrhage as well. His vision would clear and then get cloudy again.
At one point, his vision was so cloudy that he couldn’t even see the food on his plate. He could barely read the numbers on his syringe when preparing his daily insulin injections. And he would wake up in the middle of the night with panic attacks, wondering about his future.
Then, months after his initial diagnosis, he got even worse news: A doctor warned him that he might go blind.
Unable to work and drive, Demeyer moved back to Belgium to live with his parents and began making contingency plans. He thought about giving up his career in animation to become a massage therapist. He recalls listening to a program for the blind on the BBC. He turned to holistic healers for help.
“I was on the road to blindness,” he said. “I thought, ‘What am I going to do?'”
The number of Americans with diabetic retinopathy nearly doubled in the last decade to 7.69 million people, reflecting the sharp increase in diabetes nationwide, according to a 2012 study by Prevent Blindness America and the National Eye Institute.
Among the more famous people with the condition is actress Mary Tyler Moore, who has helped support juvenile diabetes research.
After a year and a half and seven surgeries, Demeyer was able to recover much of his sight. The laser treatment, however, damaged his peripheral vision and left him with other permanent visual problems, such as the inability to see fine details.
Unable to do anything but rough sketches, Demeyer switched from drawing cartoons to directing them.
A graduate of the California Institute of the Arts, Demeyer returned to the Los Angeles area in 1993 and joined the independent animation studio Klasky Csupo, where he directed award-winning episodes of the “Duckman” TV series and the Paramount/Nickelodeon movie “Rugrats in Paris.”
He now works as a supervising director at Wild Canary, an animation studio in Burbank founded in 2008 that produces “Miles From Tomorrowland” with Disney Junior.
Demeyer’s ophthalmologist, Joseph Caprioli, says his patients have included painters, sculptors and musicians but no other directors.
“He has been able to compensate for his visual disabilities in a remarkable way,” said Caprioli, chief of the glaucoma division at UCLA’s Jules Stein Eye Institute.
To explain his view of the world, Demeyer uses the medium he knows best — cartoons. One shows him walking his dog and waving to a neighbor whose image is so blurred he looks like a cactus. Other drawings show him facing a class full of students, their smiley faces all identical, and tripping over a bench as he walks toward a painting.
That actually happened at his office recently when he stumbled into a stack of paintings that had been left in the hallway.
“He went down pretty hard,” said Carmen Italia, chief executive of Wild Canary. “I turned around and said, ‘Oh, my God! Paul went down.’ He gets up and says, ‘Geez, I didn’t see that stuff.'”
Only his close associates know he has diabetic retinopathy.
“What’s so amazing is that I didn’t know about his visual limitations for a long time,” said Sascha Paladino, creator of “Miles From Tomorrowland,” a popular show on the Disney Junior channel that was recently picked up for a second season.
“He’s so good at what he does and has such a great visual sense that I didn’t even know about the impairment for the first year. It wasn’t an issue. I thought it was an affectation, that little telescope, until I realized he actually needed it.”
Aside from the telescope, Demeyer does rely on the eyes of his colleagues to spot small glitches in animation scenes. And he can’t direct actors doing voice-overs. “I couldn’t see their faces,” he said. “It was so frustrating. I did it for months and said, ‘It’s not working. Let’s just hire somebody else.'”
But he doesn’t view his visual impairment as a liability. Because he can’t see the fine details of each frame of animation, he tends to concentrate on the overall flow and look of scenes and characters, giving them a distinctive cinematic quality.
And he says his tunnel vision actually makes it easier for him to focus on what is immediately in front of him and not be distracted by too much extraneous background information.
Colleagues agree that Demeyer brings a unique perspective to his work.
“Because of his limited eyesight, he gets a better visual image,” Italia said. “He concentrates so much on the overall scene … he has that cinematic sense.”
Demeyer’s optimistic outlook and calm demeanor also make him a popular presence at Wild Canary.
“I’ve been in the business for 35 years, and this guy is one of the most inspiring people I’ve ever met,” Italia said. “If I feel uptight about something, I’ll come and talk to Paul for a few minutes.”
Demeyer credits the support of his wife and parents and his religious faith for giving him strength to cope with his vision challenges. In an account of his life story he wrote for his Catholic church group, he recalled his reaction after a breakthrough surgery restored much of his sight.
“The first time I sat at my desk to write or draw, I felt this peace come over me like a blanket,” Demeyer wrote. “What a blessing, what a gratitude I felt to life, to God, to all who helped me through these few years of struggle.”
The reception of those with total blindness, however, changed during the course of the long eighteenth century. The experiences of three people (acknowledged as blind) serves to show the ways Enlightenment thinkers, and eighteenth century society in general, responded to those who were rendered separate by their blindness.
The first is John Vermaasen, who plays a small but fascinating role in the evolution of Enlightenment epistemology, appearing as a living thought experiment in Robert Boyle’s Experiments and Considerations Touching Colours (1665). An organist, Vermaasen was blind from the age of two. He came to the attention of Robert Boyle when it was discovered that he had what may be considered a case of synaesthesia; he was able (allegedly) to experience colours using his sense of touch. When presented with a selection of coloured ribbons, and asked to give their colour, Vermaasen would “place them betwixt the Thumb and the Fore-finger…his most exquisite perception was in his Thumb, and much better in the right Thumb than in the left” (Robert Boyle, Experiments, p. 45) and then describe the colours to Boyle and his companion, determining them on the basis of the asperity, or roughness, of the material. Boyle was also sent another anecdote about an encounter with Vermaasen by Henry Oldenburg, in 1665.
Boyle would go on to use this experiment to hypothesise a continuity between the experiences of the five senses, a concept that would have a profound impact on the investigation into the nature of empiricism conducted by figures such as David Hume, George Berkeley, and the French Philosophes in the eighteenth century, most notably Denis Diderot, who in 1749 would write his Letter on the Blind, advancing a theory of education for the blind based on these principles.
A less endearing postscript to this story comes from Jonathan Swift, who included a possible reference to Vermaasen in Gulliver’s Travels (1726), as part of his satirical portrait of the Royal Society in the academy of Lagado (Bk. III: Ch.5), implying that Swift, at least, didn’t believe a word of Boyle’s story:
“There was a man born blind, who had several apprentices in his own condition: their employment was to mix colours for painters, which their master taught them to distinguish, by feeling and smelling. It was indeed my misfortune to find them at that time not very perfect in their lessons, and the professor himself happened to be generally mistaken. This artist is much encouraged and esteemed by the whole fraternity.”
— Jonathan Swift, Gulliver’s Travels, Bk. III: Ch.5
We can see the identity of Vermaasen being torn between the theoretical implications of his synaesthesia and his own playful means of adapting that synaesthesia into a self-representation of his own. Ultimately though, as far as we can tell, his blindness does not appear to have damaged his professional or social life. It was transcended by the unique and philosophically interesting sensory experiences he had in place of sight.
The same cannot be said for the second of our cases, however: Thomas Blacklock. Blacklock was a Scottish poet and clergyman who lost his sight to smallpox in infancy, but went on to become an advocate and pioneer of unique educational techniques for the blind. In 1760, he was nominated to the ministry of Kirkcudbright, only to find his potential congregation turned against him because of his blindness, creating an environment so toxic that his ordination was delayed until 1762, and he was only able to hold the position for three years, before resigning in 1765.
Blacklock’s understandable outrage at this rejection manifested itself in a satirical poem which he wrote in 1765, but which remained unpublished until 1903, so damning was it of the members of his congregation who had rejected him, out of nothing more than a prejudice against his blindness. This satire, called ‘Pistapolis’, is filled with evocations of the aural nature of sermonizing, highlighting the degree to which sight is irrelevant. A typical stanza runs as follows, addressing the poetic Muse:
“…if in thy view their procession should pass,
Though thy Tongue were of Iron, and thy Lungs were of brass,
To praise them in strains, like thy subject refin’d,
Were to p—ss in the ocean, or f—rt at the wind.”
— ‘Pistapolis’, (1765), unpub.
Though he was clearly embittered by his experiences, Blacklock went on to re-invent himself under the patronage of the poet and essayist James Beattie, becoming an expert on Scottish musical culture at Marischal College, Aberdeen, again exploiting his finely tuned ear.
In the case of Blacklock, we can see the liberating potential in the Enlightenment, particularly in Scotland. Blacklock was able to realize his secular, religious, and pedagogical potential by turning to the figures of the Scottish Enlightenment like James Beattie. He was able to move towards improving society for those marginalized like himself through a programme of pedagogy and publication, an early form of disability rights activist.
Later in the eighteenth century support for the blind became institutionalized. However, this also had its limitations. Anna Williams (our third case) was a Welsh poet who lost her sight later in life, and was given an annuity to support her by the bluestocking socialite and Shakespeare critic Elizabeth Montagu. In a letter of thanks, Williams says:
“I may with truth say I have not words to express my Gratitude as I ought, to a Lady whose bounty has by one act of benevolence doubled my Income, & whose tender Compassionate assurances, has removed the future anxiety of trusting to Chance, the terror of which only Could have prompted me to stand a publick Candidate for Mr Hetheringtons Bounty.”
It is the reference to Hetherington’s Bounty which is particularly significant here. This was an annuity of £10, to be given to one of 50 blind people “objects of charity, not being beggars, nor receiving alms from the parish” (London Evening Post, 29 March 1774–31 March 1774) from a bequest of £20,000 given by Hetherington to Christ Church Hospital. While Hetherington’s intentions were praised as noble, the extent to which his charitable donations were able to ameliorate the conditions of those both poor and blind in London as a whole was called into question.
The celebrated philanthropist Jonas Hanway quantified the blind poor of the metropolis, organizing them into categories based on age and ability to sustain themselves. Hanway finds that the poor urban blind in need of Hetherington’s bequest amounted to over 600, concluding that “we must turn our thoughts to a more practicable mode, distinguishing the most distressed, and appealing to the most affluent and charitable” (Jonas Hanway, Defects, p. 262).
Anna Williams is clearly aware of the excessive demand being placed on the Hetherington annuity, as well as its informal process of deciding who was a valid candidate, claiming that submitting to it would be “trusting to Chance”, making it little more than a lottery.
Thus we can see, in these three stories, the ways in which those recognized as blind responded to the changes in society within their own communities and times across the period of the Enlightenment. Vermaasen recognized the public and philosophical potential of his unique sensory gift, and exploited it to build an identity in the early Enlightenment scientific drive to investigate and elucidate the strange or unknown of the previous generation. Blacklock saw the potential in new secular power structures developing in the universities and formal or informal circles of intellectual patronage to develop a political and pedagogical identity outside of the church. Williams, while herself benefitting from the informal patronage of the eighteenth century social network, was witness to the burgeoning impersonal, “telescopic philanthropy”, which would become a standard model of Victorian social enterprise.
The company announced its commitment to making all inflight entertainment systems accessible across its fleet of aircraft.
A human rights complaint filed against Air Canada has been resolved with the carrier promising to make its inflight entertainment systems accessible to visually impaired passengers.
Two Ontario residents filed a complaint against Air Canada with the Canadian Human Rights Commission after finding they were unable to use the airline’s touchscreen system to access movies and other diversions during their flights.
The complainants contended they were being deprived of a service that was available to other passengers and urged Air Canada to adopt a system with push buttons and other tactile indicators.
Air Canada has since announced it’s committing to making all inflight entertainment systems accessible across its fleet of aircraft.
The airline has already made changes to the systems in use on its 787 and 777 aircraft and promises future planes set for delivery in 2017 will be equipped with accessible technology.
The passengers who filed the human rights complaint say the settlement has exceeded their expectations.
“We never thought that they would go as far as confirming that everything from now on would be accessible,” plaintiff Marcia Yale said in a telephone interview.
“That’s more than we ever could have hoped for.”
Yale said her grievance with Air Canada began about eight years ago when she discovered the airline had made changes to its inflight entertainment systems.
Instead of the push-button controls she was accustomed to using to scroll through movies and TV shows, she said she was chagrined to discover a new touch-screen system on the back of the seat in front of her.
The new design prevented her from navigating the various menus or browsing through available channels, which in turn left her feeling shortchanged.
“We’re paying the same money for travel and we’re not getting the same service,” Yale said of the situation at the time.
Yale soon joined forces with John Rae, a fellow member of the Alliance for the Equality of Blind Canadians, to file a joint complaint through the Human Rights Commission.
Air Canada did not respond to repeated requests for comment, but Yale said the airline initially defended its practice by contending that inflight entertainment was not part of the service they provided because the hardware was built into the aircraft.
Yale said the company did make moves to address their concerns, however, by designing a template that could fit overtop of the touchscreen and provide a tactile frame of reference.
Air Canada issued a statement saying no inflight entertainment systems on the market today are currently designed to be accessible to the visually impaired, forcing the company to get creative internally.
The company said it adapted the current system, provided by Panasonic, to make it accessible. Yale said the new system now features a hand-held remote control, as well as audio functions that can be enabled through the touchscreen.
“We are extremely proud to have a creative and innovative team that was able to develop these solutions over the years. As technology evolves, we are hopeful that (inflight entertainment) systems manufacturers will follow our lead,” said Eric Lauzon, Air Canada’s manager of multimedia entertainment.
Enhancements to inflight entertainment and other seemingly secondary services will be crucial for airlines that hope to stay competitive, says one analyst.
Barry Prentice, professor with the I.H. Asper School of Business at the University of Manitoba, said air carriers increasingly struggle to compete on price.
This forces airlines to make themselves more attractive through offerings such as food and drink menus, low baggage charges or quality of inflight entertainment, he said.
“Accessibility for the visually impaired is an example of nonprice competition that could be difficult for a competing airline to offer, or at least to do so at the same cost,” Prentice said.
All but three of 30 blind persons who applied for visas to attend the World Blind Union Conference in the United States have been denied, Concerned Persons with Disabilities, said on Tuesday.
“We express our utter shock, surprise and disappointment at the manner the US Embassy in Ghana has dealt with the Visual Impaired Applicants who intend to travel to the US to the World Blind Union organized Conference,” spokesperson of the group, Adongo Atule Jacob said.
He told Adom News that the conference sought to improve the quality of life of blind persons and those with low vision people by providing a common platform for advocates, policy makers, consumers and service providers discuss pertinent issues.
The forum, expected to take off on August 18 in the US, would serve as a major platform for the stakeholders to expand both inter-regional and international networks, share information and learn about new techniques and service models.
But, Mr Jacob said, out of 30 visually impaired persons who have applied for the non-immigrant visa to attend the conference, only three have been granted visas, without granting same to their guides and wondered how they could be aided at the conference.
He said the Embassy’s action contravened Article 9 (2) e and Article (19) b of the UN Convention on the rights of Persons with Disabilities and its optional protocol.
“Our investigation showed that all Visually Impaired Persons were assigned to one specific cage and [an African American] interviewer whilst for non-persons with disabilities, their names where mentioned out and assigned to different cages,” he said.
He called on the US embassy officials to investigate and grant the people deemed qualified the visas since the US prides itself as a defender of rights of the minority.
“The Visually Impaired Persons are not against the Embassy not granting a visa to applicants who do not qualify but rather against the discriminatory nature of which People with visual impairment have been denied visas,” Mr Jacob said.
He noted that blind persons have attended several conferences in Denmark, Switzerland and other developed countries including the UK and have returned, so disqualifying them on the basis of not having strong ties to their country of origin is untenable.
They have threatened legal action against the Embassy.
Photos and paintings at The Andy Warhol Museum are set up chronologically by decade, starting at the top.
From the seventh floor, School Programs Coordinator Leah Morelli explains, “This is the floor in which his early life starts and the story begins.”
But even without a human guide, all visitors — including those with visual impairments — will soon have a tool to let them know where they are and what’s around them in the space thanks to the organization’s first audio guide.
“Usually on an audio guide, when you go to a museum, you see a number on the wall and you have to type that number in and press enter to hear the content,” Digital Engagement Manager Desi Gonzalez said.
Rather than manual entry, the Warhol is using technology called bluetooth beacons to push out content based on where visitors are located.
Cultural institutions from around the world get a sneak peek of that technology this week as part of the Leadership Exchange in Arts and Disability conference, or LEAD, which is being held locally at the Westin Convention Center in Pittsburgh for the first time.
The museum will share some of its best practices and accessibility initiatives with attendees, including the audio guide.
The guide application breaks down each location’s content into chapters and starts with an introduction.
In the gallery, Gonzalez hits play on her app, and a deep voice streams from her phone.
“Hi, my name is Donald Warhola. I’m a nephew of Andy Warhol, and I work here at the Andy Warhol Museum. Andy Warhol was born Andrew Warhola in the Soho section of Pittsburgh, Pennsylvania on August 6, 1928, and he lived here until he graduated from Carnegie Tech when he was 20 years old.”
But what comes next isn’t your typical audio tour. Gonzalez said the Warhol developed its first guide with accessibility in mind from the start. It includes selectable content for those with visual impairments like descriptions of the work.
The next chapter goes on: “6-foot-tall, 4-and-a-third-foot-wide canvas, features a single can of Campbell’s soup with a ripped and pealing label. The large black and gray can stands just to our right of center, rendered in graphite and thin casing paint.”
The application was all developed in-house by the innovation studio at the Carnegie Museums of Pittsburgh.
Chris Maury, 29, who provided feedback throughout its design process, said he’s looking forward to the app’s official launch.
He’s the founder of a Lawrenceville-based startup company in Pittsburgh, Convesant Labs, that designs tech for people with visual impairments. Five years ago he discovered he was slowly losing his own vision.
“[The optometrist] couldn’t fit a new prescription; my eyes just wouldn’t adjust correctly, and he was like, ‘That’s weird,’” Maury said. “So he took photos of the back of my eyes and saw scarring in the center, which is indicative of this retinal disorder called stargardt macular degeneration, which is what I have.”
Maury said he won’t be legally blind for a few years, but as-is, he can no longer drive a car or read restaurant menus. Overall, he said he’s still able to do 90 percent of what he could do before.
After his diagnosis, Maury founded Pittsburgh’s accessibility meetup, a group that focuses on technology and advocacy. The group works with the city to prioritize accessibility infrastructure and provided feedback throughout the Warhol’s audio guide development.
Maury said the goal of any application should be universal design so every user can have a positive experience.
“Throughout this entire process, from kind of the brainstorming phase to actually building it and testing it with users, it’s, ‘What are the needs of people with disabilities? What are the features we need to support? What are the needs of everyone else?’” Maury said. “How do we provide the best experience for both of them in the same space?”
Warhol staff said consultants, researchers and community members found that between the disability community and broader community, many needs were the same.
Danielle Linzer, the Warhol’s curator of education and interpretation, said making a welcoming and accessible space is about anticipating diversity while creating physical spaces, programming and products.
One size never fits all, she said.
“We’ve really been thinking a lot about choice,” said Linzer. “How can you provide individuals with disabilities with the same kinds of choice, the same kinds of opportunities that general visitors can come to expect from cultural institutions?”
Linzer said the museum will continue developing initiatives like sensory-friendly programming. The organization also uses portraiture to help people on the autism spectrum understand facial expressions and non-vocal communication.
During the LEAD conference, the Warhol is premiering several tactile reproductions of paintings to help visitors with visual impairments understand the shape and contour of works on display.
“Access is something that’s never really done,” Linzer said. “It’s not like, ‘Oh, we checked that box. We finished that work.’ It’s really about an almost philosophical approach and a practice of engagement, and it’s something that we are continually working to improve here.”
Many iPhone users with visual impairments use a video FaceTime or Skype call with a friend for a brief session of sighted help—to find a hotel room door, for instance, or to help set the controls on a washer or dryer. But what if your friends or family members are not available when you need assistance? Or maybe you call the same person again and again, and you worry you might be overstaying your welcome?
Mobile identification and text recognition apps such as TapTapSee, Talking Goggles, and the KNFB Reader can take up a lot of the slack, but there are times when you really do need a working pair of eyeballs. Now, thanks to a new iOS app called Be My Eyes, sighted help is just a tap away.
How Be My Eyes Works
Be My Eyes pairs sighted volunteers with visually impaired individuals who would appreciate a bit of remote assistance. The app is free both to download and to use.
For visually impaired users, the app could not be simpler to use. Most of the screen is taken up by a single control to connect you to the first available helper. Double tap this button and your device will announce, “Creating connection request.” A few seconds later a sort of electronic ring tone begins to play, and soon you are connected to a sighted volunteer through a two-way audio and one-way video connection using the opentok/tokbox video platform.
The volunteer can view your environment through the higher-resolution rear-facing camera. With a connection established, you can converse with the volunteer, introduce yourself (if you like), and ask for help with whatever identification task is at hand. You can disconnect at any time.
When you first open the app you are asked if you need assistance or wish to provide it. In either case you are required to register. You can do this using your Facebook credentials, or you can create a Be My Eyes account with your name, e-mail address and the password of your choice. More about this later.
If you register as a helper, you merely need to leave the app running in the background. When it’s your turn to offer assistance, the app will alert you. If you don’t respond within 10 seconds or so, the app servers will move onto the next person in the queue and alert them. “At first we tried pinging ten people at once, so people requesting assistance would not have to wait so long for a response, but we started getting e-mails from volunteers who were frustrated because they wanted to help, but were not the first to respond,” says Hans Jørgen Wiberg, the service’s founder.
Turning an Idea into a Service
Like many of us, after a few remote FaceTime sessions, Wiberg had the idea that we could more easily obtain sighted help if there were only some way to tap into a wider network than just our friends and family. Unlike most of us, however, Wiberg put action to thought, and he isn’t even a programmer. Wiberg, who lives in Copenhagen, Denmark, is a part-time upholsterer and Regional Chairman of the Danish Association of the Blind.
Wiberg took his idea to a local startup meeting, where people come together to exchange and refine ideas for new businesses and services. There he teamed up with seven others, none of whom were programmers. They formalized their idea and began searching for grant money.
With just a few thousand donated Danish Krone, the group hired outside developers to create an iOS app. They released it in the Danish App Store in November of 2014, and beta tested it with just a handful of users. After the user base reached 150 blind users and 400 helpers, the group was awarded a substantial grant from Velux, a Danish window and skylight company. Development continued until January 15, when the Be My Eyes app and service were released worldwide.
“The response was more than we dreamed,” says Wiberg. “In just a few days we had over 60,000 users, most of them potential helpers,” he says. “The signups came so fast, by the end of the second day we had to suspend the service while we moved to the largest server our provider can host.”
The main app screen displays a running count of the number of sighted and blind users who are registered. It also displays the number of individuals who have been helped—over 10,000 in the first six days. A future app update will also include the numbers of volunteers who are currently available. “This will help users have some idea of how long it will take to either offer or receive help,” says Wiberg.
Putting Be My Eyes Through its Paces
I first tried Be My Eyes just a few days after it was released. The first two attempts were unsuccessful: after 20 minutes I had not yet been connected to a volunteer. I was using the app late on a Sunday evening, around the time when the servers were being swamped with setup requests, so those circumstances may have played a part in the delays.
The next day I tried the app several times, and each time I was connected within 2 minutes. According to Wiberg, this is the norm. “There are going to be people who for some reason cannot answer an alert in time, and we have to connect to several different helpers, one at a time, before a request is answered. Other times there may be server problems caused by our rapid growth. My advice to users seeking help is that if there is no response within 3 or 4 minutes, disconnect and immediately try again.”
My first Monday call was answered by a woman in Britain. My question was simple: “Is this package of teabags caffeinated or decaf?” “Caffeinated,” came the reply, and after a quick “thank you,” I disconnected. Total time: less than 2 minutes from start to finish.
My second request was answered by a man in California. He helped me access my thermostat and find the LCD off setting.
My third session was answered by a man in Germany. I had inadvertently left the plastic cover to a vegetable seed starter on the patio table, and sometime during the night it had blown away. Together the volunteer and I search the backyard for it. We did not find it, but the help was still useful as it saved me the considerable time I might have spent walking around the yard, hoping to encounter it.
One task I did not try, and hope I do not have cause to for some time to come, is getting help with the computer error message that has in the past locked up my screen reader or prevented it from booting. My computer seems to know when all of my friends and family are unavailable. It must—why else would it always choose those times to crash?
On initial setup, the Be My Eyes app uses your iOS device’s default language setting to direct your calls. English speaking helpers are always connected with English speaking help requesters, French with French, and so forth. But the app’s Setting menu offers you the ability to add additional languages, which is how I was able to connect with an English speaking helper in Germany.
According to Wiberg, your personal information is not shared with the helper. You may then wonder why you need to enter your name and e-mail address to create a Be My Eyes account. When I posed this question, Wiberg replied, “Both the helper and user can report a problem member, and we can then block that [account] and prevent [the user] from returning.” Unfortunately, the version I tested, 1.2 (45), did not require any e-mail verification, which means someone could make up a series of false accounts and cause mischief. Perhaps verification will be a part of an update in a future version.
Common sense would dictate that Be My Eyes users avoid asking questions about bank or credit card statements, medical reports, or any other information you want to remain private. Wiberg offers a useful rule of thumb: “If you were walking down a street and needed to know what you are considering asking [a Be My Eyes helper], would you feel uncomfortable asking a stranger?” If so, find some other way to obtain the information. Some may wish to consider the opposite scenario: Perhaps there is something you wish to keep private from your friends and family?
It’s probably best to avoid asking a Be My Eyes helper to assist in orientation at a busy intersection or other potentially dangerous scenario. Currently, the app contains no rating system for users to weed out what I can only believe would be a very few bad apples.
What’s Ahead for the Be My Eyes App
Wiberg is determined to keep the service free. He states that currently they have enough money to pay for development and server resources through next September. Consequently, I would not be surprised to see a Donate button pop up in a future release of the app, on the company’s website, or both.
The app is currently available only for iOS devices. There are no immediate plans to create an Android version.
Ironically, the biggest hurdle Be My Eyes currently faces is finding enough blind users. “The response to the opportunity to become volunteers has been overwhelming,” says Wiberg. “If they don’t get the chance to become fully involved, they may grow frustrated and uninstall the app.”
Until I uninstalled it, I had a dinosaur app on my iPhone to entertain my granddaughter. Every so often, even when the app was not running, I received an alert asking if I wanted to play. I can see many potential helpers who might reset their phone or change devices, and forget to restart the app. Perhaps a future update might include a similar gentle reminder to those with the app installed but left closed for several weeks?
I also hope Wiberg and his colleagues publish a Be My Eyes API that would enable other apps to seamlessly link to the app. BlindSquare, which we reviewed in the July 2014 AccessWorld, offers the ability to reach out to someone in your contact list for a bit of e-mail or text message help. Imagine how much more powerful BlindSquare, or the Seeing Eye App for iPhone, would be if users could request sighted help directly from within their accessible navigation app?
As it is now, Be My Eyes is an extremely powerful platform whose time has come. I will still keep both TapTapSee and KNFB Reader on my iPhone home screen, but Be My Eyes will definitely be my fallback—and in many instances, my go-to—resource for those times when greater independence can best be achieved by knowing when and how to ask for help.
Audio description makes our TV services more accessible to blind and visually impaired people by explaining what is happening on screen using the gaps in dialogue. We routinely exceed the targets we are set by Ofcom to provide 10% of our programme available with AD.
Audio description describes what is happening on screen using the gaps between dialogue. This helps viewers with visual impairments to follow what is going on.
Audio descriptions of changes of location, actions, facial expressions, gestures and so on give the context and set the scene. They are fitted between dialogue or commentary to avoid interrupting the flow of the programme.
The BBC, ITV, Channel 4 and Five are committed to audio describing at least 6% of their annual output. The BBC is now audio describing 20% of its content on BBC One, BBC Two, BBC Three, BBC Four, CBBC and CBeebies. Programmes include popular soaps, dramas, comedies and children’s programmes.
Audio description is a free service and is available on digital TV on Freeview (with a suitable set-top box or digital TV), Sky and Freesat from Sky satellite, and Virgin Media cable. It is also available on BBC iPlayer.
You can find schedules of BBC programmes by using our Programmes website, Ceefax, digital text pages or listings magazines such as Radio Times. From spring 2009 you will be able to check the Programmes website to see whether a programme has audio description.