Monday, April 27, 2015

Quality is crucial for disability arts: Poor work fails artists and audiences

From The Guardian in the UK:

An initiative for disabled artists, Unlimited, has announced bold shows including Liz Carr’s Assisted Suicide: The Musical (pictured) and Kaite O’Reilly’s Cosy. The aim is to stop venues programming ‘the first work they came across with a wheelchair and a guide dog in it.’

“Works of art which lack artistic quality have no force, no matter how progressive they are politically,” declared Mao Zedong, and although I don’t often find myself in accord with the late Chinese Communist leader, I reckon he was right in this instance. Great art often has a social function, but not every piece of work made with a social or political agenda turns out to be great art.
Purpose and artistic quality was an issue raised at Mind the Gap’s recent event in Bradford on learning disability performance, where a range of international speakers and participants considered issues around ownership, as well as quality and positioning in work made by disabled artists.

Jez Colborne, a resident artist with Mind the Gap, spoke eloquently about owning his own work from initial idea through to its delivery, and Dennis Nilsson, an actor with Moomsteatern, a learning disability company from Sweden, said that when he is on stage he is not disabled, but an actor. David Amelot from French learning disability company Compagnie de l’Oiseau-Mouche, said that performing allowed him to show that he was a “real actor not a monster”.

Moomsteatern apparently banned all political and social aims when it was founded, arguing that they make and stage the work that they do for the benefit of the audience, not the actors. It just so happens that when the audience rate and love a show, it often means that there are significant knock-on benefits for the performers too. Moomsteatern’s artistic director Per Tornqvist spoke of the performers’ right to be on stage and tell a story “that isn’t their own”. He views the Moomsteatern ensemble simply as “actors like any other actors. Like all actors, they have their own toolbox and you have to find what screw fits the screwdriver.”

It was a fascinating day and a considerable advance on my experience last year at a Creative Minds event in Bristol when discussion of quality when applied to learning disabled theatre slipped entirely off the agenda. Here it was central. Matt Hargrave of the University of Northumbria quoted DV8’s Lloyd Newson who has said that disabled art “has to be good or it demeans the art form” and argued that quality work “combats social prejudice because the person on stage is not seen as a burden but as an artist”. Jo Verrent of Unlimited, the world’s largest commissioning programme for disabled artists which has just announced a new clutch of brilliant-sounding, ambitious commissions, argued passionately that quality is crucial but alone it is not enough and that the disability arts sector has to develop a range of work with depth and breadth. The nine Unlimited commissions certainly demonstrate that and include Noemi Lakmaier’s Cherophobia, a 48-hour living installation in which an attempt will be used to lift the artist’s body off the ground with 20,000 helium filled party balloons, as well as Liz Carr’s Assisted Suicide: The Musical and Kaite O’Reilly’s Cosy, looking at our relationship to the medical profession.

The £3m, three-year Unlimited initiative aims to give venues a choice of work and stop them from, as Verrent put it, “programming shit, and the first piece of work that they came across with a wheelchair and a guide dog in it”. Getting the right people to programme the right work in the right situation is very much part of that, and Verrent says that things have shifted significantly since 2012 when Unlimited started. The point of Unlimited is not to build the “world’s most expensive ghetto” but work that competes on a level playing field with every other piece of art being produced in the UK.

But as Pádraig Naughton of Arts and Disability Ireland pointed out, it’s not just a question of developing disabled artists but also developing other advocates including disabled programmers, curators and marketeers who can assist in widening audiences and help institutions think differently about how and where they place work and how they support it.

That could of course include encouraging critical coverage which is currently very low for work made by disabled artists and particularly low for learning disabled artists. Of course there are plenty of other ways to validate work other than a review, but reviews do help raise quality as does a culture of critical self-awareness. Reviewers will be less likely to shy away from writing about work if they feel they can be honest about what they’ve seen and can review it not on the basis of the individual achievements of those involved making the work, or its social value, but on its aesthetics and whether the show sits proudly cheek by jowl with other work being reviewed at the same theatre or other venues. To do anything else fails readers, audiences and those making the work. The encouraging thing about the Mind the Gap event was that it recognised this and understood that the over-praising or programming of poor work damages not just disabled artists but all artists.

Tuesday, April 21, 2015

Australian twins with muscular dystrophy start hackerspace to enable other people with disabilities

From ABC news in Australia:

Two brothers with advanced muscular dystrophy in Melbourne are using 3D printing tools to 're-enable' themselves – and they are now starting a public makers' space to share their tricks with other people with disabilities.

The identical twins, Chris and Nick Fryer, were diagnosed with the crippling Duchenne strain of muscular dystrophy at the age of eight, and were told not to expect to live beyond 21.

Now 37 years old, they are the oldest people with Duchenne MD in Australia, and they are continuing to find new ways to extend and enrich their lives, using home-made technological aids.

Despite being reliant on ventilators around the clock, with movement restricted to their mouths and fingertips, the brothers have made their own robots, drones, wheelchair support frames and computer aids.

"We've always been interested in technology, even when we were very young," Nick said.

"When I was little, my dad taught me how to make model aircraft out of balsawood and glue, and my disability took that away from me, but now technology has given that ability back.

"I can design things on the computer and print them out on my 3D printer and it's fantastic."

Media player: "Space" to play, "M" to mute, "left" and "right" to seek.
Small 3D printed finger devices fixed to the twins' desk enable proper computer and mouse control, while delicate fixtures on their wheelchairs aid muscle support.

"I wanted to adjust how I was sitting in my wheelchair so I designed the little piece to go in the side support bolts.

"We measured it up, designed something, 3D printed it and screwed it in and it's great."

Meanwhile, a robot on the floor – 'Bonsai Bot', named after their love of bonsai - is still a work in progress.
"He's like a pet you can turn off," Nick said.

"The black parts you can see are all designed and 3D printed by us, and we decided to put an ultrasonic sensor on it so I've made him look nice and cute."

After visiting a 'makers group' in Hawthorn recently, Chris and Nick decided they wanted to begin their own space for sharing technology and designs.

They began MESH – Melbourne Eastern Suburbs Hackers – an incorporated group for anyone interested in creating their own technology, with a focus on enabling people with disabilities.

"I think a lot (of people with disabilities) don't even know this exists, and they don't know what they can do," Nick said.

"What we want to do is to enable people with disabilities to design and create things for themselves.

"In the past it was virtually impossible for someone like me to actually make something physical, but now with computers, computer-aided design and 3D printers it's become relatively easy."

Nick says the mantra they live by is "it's not people that are broken, it's technology that's broken".

"Eventually technology will eliminate disabilities, you can already see advances in exoskeletons and prosthetics and all sorts of areas where technology is helping disabled people to, in some cases, eliminate a disability entirely."

"That's what I want to promote. With robotics and all the technology being developed, you can re-enable yourself."

The group is currently operating out of a rented space in Ringwood, but the twins are looking for a more suitable permanent home.

Access to technology has been central to the twins' survival for most of their adult life.

When they were 21, the disease had taken hold of most of their major muscles, and their lungs were struggling to support their breathing.

Chris was on the brink of asphyxiation, and ventilator technology was not readily available to people with MD.

It was only because their mother, Jenny, had seen how effectively ventilators were being used for MD sufferers in Holland, that they were able to access the technology.

But it took a crisis to get there.

Chris reached a psychotic state from not having slept properly for three months when he was 21.
His brain was waking him up automatically to prevent asphyxiation in his sleep.

Furious and desperate, Jenny took her sons into the Austin Hospital emergency department and waited eight hours to see a specialist, demanding that her son be given a ventilator.

"Ventilators weren't new technology, they could have been using them on us for a very long time," Nick recalls.

"There are a lot of MD sufferers who died unnecessarily," he said, adding that his best friend, Ben, was one of them.

Their doctor, Michelle Caldecott, helped to tailor the machine – which is much like a sleep apnoea mask – to Chris and Nick's condition.

Ventilators are now commonly used among people with muscular dystrophy in Australia, and the average life expectancy of someone has increased by ten years, now sitting at 30 years old.

Having already exceeded that age, Nick and Chris are determined to increase the average life expectancy further.

"People still think of MD as being a deadly disease that kills you when you're young. I think it's no longer true," Nick said.

"In the future the average age will go up even further than it has."

Friday, April 10, 2015

Why isn't Netflix's new Daredevil series available for blind people?

From io9. NOTE: After fan complaints, Netflix agreed to audio describe "Daredevil."

Joshua Loevy is an attorney in Kansas City, MO, who happens to be blind. For years, people have compared him to blind attorney Matt Murdock, whose alter ego is the superhero Daredevil. So Loevy was excited to check out the new Daredevil series... but he can't. 

Netflix isn't making Daredevil available in audio description, which is a format where a specially added soundtrack features a person describing the action in between pieces of dialogue. An increasing number of television shows allow audio description as an option, and more and more theaters will allow you to listen to audio description of movies using a bluetooth headset, Loevy tells io9. (Here's a list of DVDs with the feature.)

"The idea that a show about a blind protagonist is not being offered in a format that real blind people can fully appreciate it, is a bit maddening," says Loevy.

Loevy says that every broadcast TV network is now required by law to provide 50 hours of content with audio description every quarter. And as for movies, even five or six years ago it was hard to find a theater that had audio description capability — but as theaters go over to digital projection, it's much easier to find.

"It was a big deal when the movie theater near my parents' place had it," Loevy says. "But now, I've found that most areas have at least two or three theaters equipped with the service." As for television, Loevy notes that it's annoying that you need to be able to navigate a visual menu to unlock the services for the blind — but at least there's a decent amount of content.

Loevy hasn't even experienced the Ben Affleck Daredevil movie, but he's curious to check out the new Netflix version. [Edit: An earlier version of this post said "see."]

"It just serves to drive the point home, that even [with] this show that's centered around a guy that's blind," it's not available for the blind, says Loevy. Daredevil is a character "whose superpowers are derived, in a sense, from his blindness," and the show is "more blind-centric than others." Daredevil is available in closed-captioning, but not in audio description.

When CNBC contacted Netflix about this issue, a Netflix spokesperson responded, "We are working hard to provide great entertainment to all our members, including the hearing and visually disabled. We don't have any further updates to share at this time." 

A grassroots organization called the Accessible Netflix Project, made up of 11 blind volunteers, is pressuring the company to change its policies and add audio description.

Monday, April 6, 2015

Microsoft announces pilot program to hire autistic people

From Corporate Vice President, Worldwide Operations, Microsoft.  Pictured is a group from Specialisterne Connecticut.
In honor of World Autism Awareness Day, April 2, I had the privilege to attend and speak at an event held at the United Nations in New York City, where the theme was “Autism, The Employment Advantage.”
This theme resonates with me on two levels.

First, as a parent. I am the proud mom of Shawn, now 19, diagnosed with autism when he was four years old. Secondly, as a proud executive at Microsoft. A company that believes strongly in diversity.

At Microsoft, we believe that diversity enriches our performance, our products and services, the communities where we live and work, and the lives of our employees. We provide an inclusive environment where everyone can do their best work and have been investing in these programs for many years. In fact, this was one of the things that attracted me to Microsoft.

We have been committed to enabling people with disabilities to be successful for a long time. We also work with Supported Employment and vendor partners to hire people for roles in event services, transportation, and food services. In these roles, we see only 1 percent attrition level. Today, people can consider a wide range of opportunities in supported employment with our vendor partners at Microsoft.

This week, we announced another exciting effort, a new pilot program with Specialisterne, focused on hiring people with autism for full-time, Redmond-based Microsoft positions. It’s early days but we’re excited to get going and we know we’ll learn a lot along the way. Why are we so passionate about this space?

It’s simple, Microsoft is stronger when we expand opportunity and we have a diverse workforce that represents our customers. People with autism bring strengths that we need at Microsoft, each individual is different, some have amazing ability to retain information, think at a level of detail and depth or excel in math or code. It’s a talent pool that we want to continue to bring to Microsoft!

This represents only one of the ways we are evolving our approach to increase the diversity of Microsoft’s workforce. We believe there is a lot of untapped potential in the marketplace and we are encouraged by the strong level of readiness from the vendors who cater to this segment.

Our effort goes beyond autism. We are passionate about hiring individuals of all disabilities and we believe with them, we can create, support, and build great products and services. Our customers are diverse and we need to be as well.

At Microsoft, we encourage all employees to realize their full potential. This belief and the inspiration I get from my son is what drives me personally and why I was honored to speak.

The day my son was diagnosed I distinctly remember the final words of two doctors I overheard as my husband and I left the medical center, “I think they understand.”

I also remember how we walked to the car, pulled onto the road, drove 15 miles to our home, and entered the house. All in silence. We did not know what to say.

But we do now. What we learned over the last 15 years was to find our voice. To model what a unique advantage a young man like my son Shawn can offer. To think of where he is now, a college freshman and part-time employee, and where he has the potential to go, makes my husband and I so proud.

I am also proud of how our society and our workplace is moving forward with the commitment to help support people with autism and disabilities in general.

Candidates interested in our pilot program can email resumes to Find out more about Microsoft’s commitment to diversity and inclusion.