Wednesday, June 22, 2016

Tangled, Toronto’s first accessible art gallery for disabled artists, is bringing the outsiders in

From The National Post in Canada:

Outsider art – a term coined in 1972 by British art historian Roger Cardinal –was often displayed in the 1970s without the artist’s name, who was rarely even invited to openings of exhibitions that featured their work. In fact, disabled artists and their perspectives often weren’t considered integral based on the assumption that they produced artwork “in spite” of their disability, were void of intention and unable to develop their craft to begin with. They were more spectacle than work of art. 
But even in the 19th century, artists like Henri de Toulouse-Lautrec – whose genetic disorder pushed him to take refuge in art when he couldn’t participate in physical activities – were able to make a name for themselves. And of course, Claude Monet, the renowned French Impressionist painter, had impaired vision later in his career due to double cataracts, leaving him only able to see and paint in a range of blues, which became his predominant palette. He lived in perpetual fear that his career was over because of his disability. 
“These legacies of outsider art still haunt us,” says Eliza Chandler, artistic director of Tangled Art Gallery, the first art gallery for disabled artists in Toronto, that is also entirely accessible. “We work hard to dispel the assumption that disability artists aren’t professional while also bringing attention to the systemic and attitudinal barriers (facing them).” 
Tangled is featuring works that don’t shy away from the differences they represent, whether that means hanging it at a lower level, captioned video and audio or the use of 3D printers to produce tactile versions of every piece. 
The hope, Chandler says, “is to establish a new standard of artistic excellence to which all galleries will have to comply.” It’s a noble goal that began 15 years ago when Tangled first started operating as a non-profit arts organization dedicated to cultivating disability arts by supporting the professional development of artists who identify with a disability. 
With their first brick-and-mortar gallery at 401 Richmond West, Toronto’s premiere establishment for the independent arts and one of the only accessible art buildings in the city, Tangled is hoping to open itself up to a wider audience. 
“This gallery gives a permanent home to disability arts in Toronto and having this home in a building as culturally significant as 401 Richmond signals that disability arts is a main contender in the Canadian arts ecology,” says Chandler. 
With an emphasis on art that places a positive light on difference, it makes sense that Tangled would launch the gallery space with “Constructed Identities,” an exhibit by gay, feminist Canadian artist and writer Persimmon Blackbridge, who has been practicing disability art for 44 years. 
With a self-proclaimed “in-your-face insistence on pride in our identities,” but also a “quiet beauty” in her work, she is indelibly Canadian, and yet, also someone who has explicitly experienced the isolation of being a disabled artist in a largely inaccessible world. 
“There are many ways that people are closed out of art – stairs to galleries or works hung at heights that tell people who use wheelchairs that the work is not for them; written text that closes out people who can’t read, audio elements that aren’t translated for deaf folks, or visual elements that aren’t translated for people with visual impairments,” Blackbridge says. “As a person with a learning disability, a psychiatric diagnosis and more recently, kidney disease, my art has referenced disability since the late ‘70s, and so it has been important to me to make my work as accessible as I can.” 
In fact, galleries like Tangled have challenged Blackbridge to make her work even more accessible and take into account exclusions that she wouldn’t have noticed in her work otherwise. 
Featuring 28 figures of mixed media wood construction, and poignantly touching on themes of disability, diversity and sexuality, the title refers to “both the way the figures are built and to the ways that identities are inscribed on our bodies.” 
“When an artist makes a figure, they are confronted with all the identities that society reads onto our physical selves: gender, race, size, ability and disability,” says Blackbridge. “You can grapple with how to represent our complex and diverse selves or you can pretend that some default normal body represents us in all our wild human difference.” 
In other words, it’s work that is relatable to everyone — if they’re open to it.
“Some pieces are in honour of friends who have died, others combine materials that have personal meaning for me, like the oxygen tube my mother used when she was dying of cancer,” says Blackbridge. “But these stories aren’t explicit in the work. Instead, they allow for the audience to read their own stories into the pieces, which is a different kind of strength.” 
Although she cites Tangled, Vancouver’s Kickstart and Gallery Gachet as groups helping to make change, Blackbridge still finds progress towards greater accessibility moving at a slow pace, particularly considering technology’s rate of growth. “Discrimination, lack of access and just an all-round lack of understanding is still rampant, and change is happening very slowly,” she says. “There’s a long way to go. But opening the world to the particular creativity that people with disabilities have always had to incorporate, into both our art and our day-to-day lives, would bring huge benefits of strength, delight and new ways of thinking to Canadian society.” 
“Artists feel freer to claim their various overlapping, intersecting identities instead of hiding them and feeling like they need to identify just as an artist and not as a disabled artist or a trans artist, what have you, in order to be taken seriously,” Blackbridge says. “The freedom that younger artists are demanding is an inspiration to me.” 
And it’s that generation that is helping to continue the wave of change Blackbridge hopes to develop. With the singular objective of embracing difference and diversity in its art and artists, Tangled is bringing the outsiders in, abolishing the label and creating a new, inclusive home.  
Blackbridge’s exhibition concludes on July 4, after which Tangled will feature “Points of Origin,” large-scale textile work by mel g. campbell (July-September), followed by an exhibit of the painting installation “Mad Room,” by Tangled’s current artist-in-resident, Gloria Swain (October-December).

Monday, June 20, 2016

The British comic book where disabled heroes save the world

From The Guardian in the UK:

“We have constant disagreements over who’s better: Superman or Spider-Man,” says Dan White, referring to conversations with his 10-year-old daughter – and superhero inspiration – Emily.
“I tell her, ‘Superman has heat rays, x-ray vision and strength.’ She says, ‘Yeah, but Spider-Man has a better outfit.’ ” He laughs. “I can’t respond to that.”
Talk to White, 44, and within minutes, his enthusiasm for two things shines out: Emily (or “trouble in a bottle”, as he calls her) who was born with spina bifida, and superheroes.
Until last year, White was employed at an electrical merchants and worked on his drawings on and off in his spare time. Now, he is a full-time artist and is about to launch his own comic book, The Department of Ability, based on a team of disabled superheroes who are set to save the world – and fronted by the character “Emily” and her flying wheelchair.
The comic’s characters will be showcased at a special event at Hamleys in central London on 26 June. The toy store will be dedicating three floors to a launch that is expected to be attended by 300 fans, including Paralympian Hannah Cockroft. Other fans of White’s characters include radio and television presenter Zoë Ball and Dame Tanni Grey-Thompson. They, along with Cockroft, also appear in the comic.
In a sign that even bigger things could be yet to come for White, his comic book heroes have now caught the attention of Stan Lee, the comic book writer, editor and publisher, and the man behind Marvel heroes including Spider-Man, the X-Men, Iron Man, Thor and the Hulk. He has been in touch with White about how he can support the comic book series when it is published.
“It’s incredible,” White says. “With the most creative, brilliant, globally known creator of comics and superheroes interested in this project, it will mean that finally disability has its most well-known creative champion.”
To understand how White got here, he points to the day that Emily – then three years old – was given her first wheelchair. Wanting to show his daughter other disabled people that she could relate to, he flicked through television channels with her. “But there was nothing,” he says. “Some educational stuff but nothing fun. No one there just as them, rather than ‘the character in the wheelchair’. So I did something about it.”
From his front room in Hampshire, White started to develop comic characters – from Pawsy, a cheetah from London Zoo with a hi-tech running blade, to Claypole, a brilliant scientist with white canes and psychic abilities – and posted images of them on the Facebook pages of disability charities. Eventually, one –Strongbones, a children’s charitable trust that provides financial help to children suffering from brittle bone disease, bone cancer, and other bone diseases – responded and with its support, in White’s words, “things escalated”.
“It’s incredible,” White says. “It’s changing the game – not just for the comic book but for disability generally.”
“Dan’s so enthusiastic about the work he does, because he sees the positive potential this can bring,” Grey-Thompson says. “It’s really important that disabled children are able to see representations of people who look a bit like them in the media so that they can see all the different things that they have the ability to do.”
This is something that is clearly driving White. Not only does he want to produce a credible comic book that fans of the genre will embrace, he also wants to create something that will “make a little dent” in the ongoing exclusion of disabled people.
Throughout the comic’s development, White has brought in disabled talent, asking Bradley Davies – an artist with a neurological disability – to design the spaceship for the comic’s villain. Emily herself came up with the character Azzi – named after her teddy bear – and decided he should have a prosthetic arm.
“Disability blindsides people in the media – it’s not necessarily ignorance, just fear,” White says. “But there’s breathtaking talent in the disabled community. It should be mainstream.”
The children at Emily’s school are already starting to notice White’s work.
“She was always the first to take the pages [of the comic] into school or copy them down,” White says. “Now kids she doesn’t know come up to her and ask, indicating to her wheelchair, ‘is this the flying wheelchair?’ ”
For White, the resurgence of superheroes in popular culture made comics the logical platform to bring disability to a mainstream audience. There is arguably a natural affinity between disability and superhero culture, whether that is literal – with disabled characters such as Daredevil, who is blind, and Professor X, who is paraplegic – or the more symbolic, with a focus on outsiders turned victors and different abilities enhanced by technology. But White believes the popularity of the genre means there is no limit to who the disabled characters can reach.
“Everyone loves a superhero,” he says. “It’s a huge part of culture – everyone has an Avengers bag or has seen that sort of movie. I thought, if I could do this, everyone would see it.”
What stands out in The Department of Ability is that the use of superheroes is not only about the cultural reach of the characters but how it allows disability to be represented. These aren’t disabled people being passive or instigating pity. They are set on saving the world.
“It’s something that’s showcasing disability as power and strength,” White explains. “Every kid, no matter what, has that ability.”

Friday, June 17, 2016

Disney•Pixar unveils mobile audio description for ‘Finding Dory’

After lots of collaboration, tweaking and testing, the LightHouse is proud to announce that this week, blind people will be able get audio description for one of the summer’s biggest movies, on their own device, without asking for help. 
That’s right! On Friday, June 17, blind and visually impaired audiences will be able to get free, mobile audio description to accompany the release of Disney•Pixar’s Finding Dory
The past year has seen lots of technological advancement in audio description technology, with Disney•Pixar leading the way for film studios with their app, Disney Movies Anywhere. The app was first demonstrated at the White Canes Red Carpet event in December, released at home with The Good Dinosaur, and discussed at length at our SXSW panel in March. Between these events, focus groups, and enthusiastic collaboration with Guide Dogs for the Blind, the Blind Babies Foundation, and other blindness organizations, this has grown much bigger than just one app: it’s a statement of purpose. 
Disney•Pixar’s smart-syncing audio description, native to the mainstream app, represents thoughtful design that works for everybody.  When activated, it provides an add-on experience which levels the playing field for audiences who are blind or have low vision. 
Paired with any Disney•Pixar film using headphones or earbuds, the app delivers an extra audio track which elegantly narrates important on-screen action for those who can’t always follow along visually. Now tested and available to use with Pixar’s 16 other feature films, the app’s functionality will work for its first new release when Finding Dory hits theaters this week. 
Accolades for DMA 

Earlier this week, FCC Chairman Tom Wheeler honored Disney Movies Anywhere with the FCC’s Advancement in Accessibility Award, which recognizes achievements in communications technology for those with disabilities. Alongside other innovators in the accessibility field, Disney•Pixar is proud to guarantee audio description to its fans when it comes to both new and classic films.

Thursday, June 16, 2016

In Hollywood, diversity usually ignores disabled people

The story at the heart of Warner Bros.’ recently released film “Me Before You” is what fairy tales are made of. An adaptation of Jojo Moyes’ 2012 book of the same name, the movie follows the relationship between a young banker (“The Hunger Games’ ” Sam Claflin) left paralyzed after an accident and his caregiver (“Game of Thrones’ ” Emilia Clarke). But to some, the choice of the able-bodied Claflin is yet another example of the film industry limiting the roles actual disabled actors get to play.  
Diversity has been the talk of Hollywood, but for the most part, the conversation has centered mostly on race and gender. Some have brought in issues of sexuality, but many feel the discussion should expand to include the disabled.  
“If you’re going to discuss diversity, it has to be completely inclusive of the groups that really define diversity, not just a select group that is popular,” said actor Danny Woodburn (pictured on "Seinfeld"). “It’s popular to say LGBT groups, women, people of color define diversity. It’s not so popular to say people with disability define diversity. But the reality is that disability puts the ‘D’ in diversity.” 
Hollywood has long received criticism over its lack of diverse representations of people in front of and behind the camera. The most recent critique came earlier this year when the film academy announced an all-white slate of acting nominees for the second year in a row. The hashtag #OscarsSoWhite, created by April Reign, immediately trended on social media. In an interview with The Times, Reign verbalized her stance on what she called “the erasure of marginalized communities” and posited a definition of diversity that included differently abled people. Most of the advocacy thus far, however, has centered on women, people of color and lesbian, gay, bisexual and transgender people. 
Even when the film academy president, Cheryl Boone Isaacs, announced the organization’s commitment to diversity post-#OscarsSoWhite, only women and people of color were singled out. Additionally, The Times’  list of 100 people who could help broaden diversity in the academy — and in Hollywood — was focused on race, gender and sexuality.  
To Woodburn (“Jingle All the Way,” “Seinfeld” and “Teenage Mutant Ninja Turtles”), who as a little person counts himself as a person with a disability, such an exclusion puts forth “dangerous rhetoric” that ignores a significant group of people. 
According to the U.S. census, about 19% of the population identifies as differently abled -- that’s 56.7 million people. Their conditions range from intellectual disabilities such as Down syndrome to physical disabilities such as paralyzation or cerebral palsy. Others’ sensory perceptions could be affected, such as those with autism, blindness or hearing loss. A 2012 census report noted that this community has a lower likelihood of being employed and a higher likelihood of experiencing persistent poverty. As such, any diversity conversation that doesn't make room for disabled people is “dangerous,” Woodburn said, considering the economic and policy-oriented ramifications. 
One way policy is affected by such exclusion can be seen in New York, where the Writers Guild of America, East has endorsed and lobbied for modifications to the Empire State Film Production Tax Credit to include television writers and directors who are women  or people of color. Woodburn, as vice chair of SAG-AFTRA’s Performers With Disabilities Committee, is working to get disability added to the potential list of supported diversity. 
“It’s that same separate, but equal phraseology of the 1960s, that it’s not your turn yet,” he said. “It gets my ire up. It gets me activated.”
Gail Williamson, a talent agent at Kazarian, Measures, Ruskin and Associates, has been advocating on behalf of the differently abled for more than 20 years. With 120 disabled clients on her roster, she believes a number of them could have easily taken on the “Me Before You” role.  
“We refer to it as cripface, as in blackface or painting Italians to look like American Indians,” said Williamson. “We’re hoping in the future that these films would hold up more if they indeed had an actor with a disability.” 
Preempting retorts that disabled people don’t have the talent, training or experience necessary to take on major roles -- a similar refrain used to justify inadequate representations of women, people of color and LGBT folk -- Williamson, whose son is an actor with Down syndrome, echoed the words of winner Viola Davis’ speech at the 2015 Primetime Emmys about just needing the opportunity. 
“We’ve got them waiting, people who are trained, have done their homework and have credits, but they won’t open up the doors for them,” Williamson said. “But my guys are never going to be able to come into the room with the experience that these other guys have, because its not awarded to them. Someone is going to have to see it in them.” 
Marlee Matlin, who as a deaf actress was cast as the lead in 1986’s “Children of a Lesser God,” won an Oscar and instantly became a star for the role, her first credited gig ever. 
As for people the industry should be paying attention to, Williamson and other community advocates highlight Ali Stroker (Broadway’s “Spring Awakening,” “Faking It”), Jamie Brewer (“American Horror Story”), JLouis Mills (“Heartbeat,” “The Tribe”) and Robert David Hall (the “CSI” franchise), among others.  
But as Adam Moore, SAG-AFTRA’s national director of equal employment opportunity and diversity, added: “Not only do they not have the opportunity for anything that is specifically written about [disabled people], but when [the story does have disabled characters] they don’t get the chance to even compete for those jobs more than half of the time.” 
Moore likened the situation to casting experiences of people of color where roles are slated for whites unless otherwise stated. 
“It also means nondisabled, unless otherwise labeled,” he said. “[Disabled people] are excluded almost from the beginning because stories aren’t being thought of to be told in these ways.” 
Furthermore, Moore cautioned, the experience can be doubly or triply oppressive for those living at the intersections of other identities disadvantaged in the industry, such as a disabled woman of color.  
But this is why disabled people need to be included in the industry’s definitions of diversity, Woodburn said. They too should be able to see themselves reflected in society’s cultural productions. 
“I don’t want disabled people to be a footnote in this discussion,” he said.

From David Cameron to the Grim Reaper: British cartoonist Crippen on decades of disability advocacy

From Culture 24 in the UK:

Dave Lupton, aka Crippen, Britain’s leading Disability cartoonist, has donated his huge archive of more than 1,000 cartoons to the National Disability Arts Collection and Archive, to be housed in Buckinghamshire New University.
The archive, which goes live in 2018, is an expanding and pioneering collection of digital material and cultural objects. It will tell the story of the Disability Arts Movement and its Golden Age, when disabled people and their allies broke barriers, changed the law and made great art about the struggle.  

Crippen is the only cartoonist whose work spans 30 years of changing social and political attitudes to disability, including the 1980s activism which the NDACA will celebrate and document.  
His cartoons have brought pleasure and hilarity to disability activists - particularly his Grim Reaper series - and complaints leading to their removal. So the NDACA project offers a timely opportunity for reflection.  
Like many artists, an obsession with drawing started in childhood. But for Dave, drawing offered an escape from a harsh home life.   

Disabled person label  

"As I grew older, I developed cartoon strips and kept a diary of daily events with little drawings. I could control the characters in the cartoon. I wasn’t brave enough to portray my step father directly, but I created other characters that represented him and heroes to win over them.” 
Dave’s use of drawing to challenge oppression was to re-emerge in adult life, when ‘Crippen’ the cartoonist came into being.  

“Thirty years ago, I was involved in an accident – a reckless driver wiped out my car and I was hospitalised. It was suddenly a new world for me. I used a wheelchair for quite a while. People would immediately give me the ‘disabled person’ label. I felt very frustrated. I fell back into cartooning to explain what I felt about the way I was being treated.”    

Dave’s mainstream pseudonym previous to this had been ‘Sox. Now he became ‘Crippen’ - or “Crip with a pen". He started drawing for campaigning disability and trade union publications. Dave describes this period as his education.    

“I began to meet disabled people who were politically enlightened and aware of the social model of disability. My mind opened up to all these possibilities for cartoons about barriers and oppression.  

“Looking back, I realise I’d always been a disabled person because of impairment and mental health issues following childhood trauma - but using a wheelchair focused things.” 
In the early days of Crippen, Dave felt a tension between mainstream and disability-aware audiences.  

“I used to produce cartoons for disability equality training - mostly addressing barriers and attitudes. But in my gut I felt the root cause was political. I had to split myself into the Crippen who produced sanitised material for non-disabled people and the Crippen who created increasingly anti-government cartoons.” In the end, he turned down work which over-sanitised disability.  

Today, Dave follows his cartooning instincts and feelings. He greatly admires Guardian cartoonist Steve Bell and his cultural home is Disability Arts Online, where editor Colin Hambrook has showcased Crippen and numerous disabled artists and writers.   

Grim Reaper

A popular cartoon in disability circles was inspired by actress Liz Carr’s ‘Not Dead Yet’ campaigning. A wheelchair user tells The Grim Reaper who lurks by his hospital bed: “And you can Fuck off!”  

But cartoons combining death and disability can be contentious. One such cartoon - removed and then reinstated by Facebook - featured David Cameron’s disabled son who had recently died. 
“I drew Cameron with the ghost of his son hovering at the bottom of the bed...saying, ‘why are you killing my disabled brothers and sisters?’ That one got taken off. But I explained to Facebook that it was a valid political point. Cameron had been defending disability benefit cuts, but when challenged he spoke about having had a disabled child himself. I thought “You hypocrite!"  

“Even disabled people commented that maybe I’d gone too far. But if I get a negative reaction, I’m actually getting through. If people are prepared to enter into dialogue it gives me an opportunity to explain why I’ve drawn the cartoon. Disabled artists are well placed to bridge these gaps in understanding through their work.”   

Reflecting on changing attitudes, Dave is optimistic about younger people: "Very slowly, an understanding of the social model seems to be getting into mainstream awareness and education. 
"Young disabled people still encounter the same oppression and barriers as we older crips. But non-disabled younger people are ‘getting it’ now. They engage online and ask questions about disabled artists’ work. At protests, I see young disabled and non-disabled people interacting in a non-patronising and equal way”.  

But Dave says he has also observed rigid attitudes elsewhere.  

“It is mainly older non-disabled people who are locked into a medical, charitable view of disabled people as ‘looked after’ and not allowed to have their own voice. Their reaction to an angry voice or cartoon is to be offended.”   

Dave’s archive also reflects changes in his artform from his early days of hand-drawing in black and white. 

“The BBC would send a courier to take the artwork down the motorway. I had to send roughs by post or fax. A very slow process.  

"Once the internet started it completely transformed. Now I draw outlines by hand and use my drawing archive of politician’s faces. Everything else is done by computer and off they go by email.   

“My style of thick black line and bold colours has evolved. I used to fuss around with shading, but now it’s cruder. I like the bold colours. As kids we got inspiration from Tintin and comics like The Beano. I’m going back into my childhood!”  

And childhood is where it started – but instead of challenging his step father through drawing, he now tackles Iain Duncan Smith, David Cameron and the Grim Reaper. 
“When I was three years old I had a nasty ‘accident’. My step father was violent and I was badly injured and unable to start school. But I discovered that by drawing little characters I could build up these fantasy worlds, and that’s where it started.  

Dave values his contact with a community of disabled artists and thinkers. He uses Facebook to develop and critique new cartoons “without being censored”, to the point where he feels that Crippen has become a collaborative venture as a result of online discussion. “I’m gathering suggestions, creating and sharing ideas with other disabled people,” he says.  

Tuesday, June 14, 2016

How YouTube videos have helped people cope with mental illness

Rachel Star Withers (pictured) runs a YouTube channel where she performs goofy stunts on camera and talks about her schizophrenia. 
Since 2008, when the then 22-year-old revealed her diagnosis online, tens of thousands of people have seen her videos. Some of them have a psychotic disorder or mood disorders themselves, or know people who do. 
They say her explanation about what a symptom like hallucinations feels like can be really helpful. So can Rachel's advice on ways to cope with them, like getting a dog or a cat. If the animal doesn't react to the hallucination, then it's probably not real, she says. 
We talked with people about how Withers' videos have helped them understand these diseases. What follows is a Q&A with two of these people. The interviews have been edited for length and clarity. 
Julia Billingsley is 22 years old and from Peoria, Ill. She learned she has schizophrenia last year, but she says her earliest encounter with the disease was back when she was very young. Her mother has schizophrenia, too, Billingsley says, and often had a delusion that their home was bugged. 
Julia, you started developing symptoms last year. Do you remember the first thing that happened to you? 
I'd just started dating my current boyfriend. And I'd be over at his house and I'd go to the bathroom. And this thought, this intrusive thought that wasn't my own at all would pop into my head like with force. And it would be like, hey. This room is bugged. And I was like, what? It made me stop. I stopped what I was doing and I didn't understand why my brain was thinking that. 
Then it clicked. This might be a symptom. 
That's actually how I found Rachel's videos. I knew what was happening to me, and I got obsessed. I had to know everything about it. And I came across her videos. It really put a name and a face to everything I was going through. It showed me I wasn't alone. 
Sometimes I would just click through all of her videos and I would find a video on something I had no idea about. Like depersonalization [feeling disconnected from yourself]. And it prepared me in a way. So when it did happen to me, I was like this is just depersonalization. I just have to ride it out, and I'll be fine. 
Seeing the videos and knowing that Rachel had made it through that too, did it make you feel safer? 
No, not safer. Just stronger. Schizophrenia is so smart in a way. I had a delusion where I thought my boyfriend wasn't my boyfriend. I thought he was a doppelganger or something. I started rationalizing like, this is just a schizophrenic thought. And it turned around and was like, that's just what he wants you to think. And just seeing all of Rachel's videos and hearing her coping mechanisms really made me stronger. 
You say you actually had to hide your disorder from your family. Did the videos sort of stand in as a support system in a way? 
Yeah. Growing up, [schizophrenia] was the root of all evil in my family. And my boyfriend, bless his heart, he is amazing. But he has no idea. He can try, but he can't even comprehend what it's like. So when you come across someone who goes through the same exact thing as you — it's — you don't even have to explain it. It's like one word, and they're like, oh yeah. Me, too. Definitely seeing other YouTubers, especially Rachel, it's definitely a support system. 
Don Moore is 64 years old and from Portland, Ore. His daughter has schizophrenia and was diagnosed in 2003. A few years later, a friend of his saw Rachel's first video, Normal: Living with Schizophrenia, and sent it to him. "I saw that and I said, wow. That's so much like my family and my daughter and our experience," he says. 
Don, what did it feel like when you first saw the videos? 
Oh, I was in tears. Mostly I watched it myself. I watched it multiple times. It kind of changes you. You always hear the story that you're not alone. Well, in this case, truly, truly I was not the only one. 
That [first video] was fascinating, when I saw her with her parents and talking about some of the difficulties. The parents would say wow, she'd be great and really wonderful and turn around and it would be like, whoa, who is this? I could relate to that. It's very hard to find someone who has a commonality of experience. And Rachel's' videos at first were like, wow. OK. Now I have something to see and something to compare with. 
When you watch Rachel's videos, does it help you recognize when your daughter started getting symptoms? 
We noticed something wrong from birth. Whenever she would wake up, she would scream at the top of her lungs. One night this happened, my wife's sister was staying with us and she came over. My wife was rocking Tracy to sleep, and her sister said, what are you doing to that kid? It sounds awful. And Pamela said, I'm trying to comfort her. 
And when I listen to Rachel describe her childhood, visualizing monsters and being disturbed or bothered by certain kinds of things, I could relate to that. That helped me understand some of the things I saw when I was with my daughter and I couldn't put my finger on exactly what they were. 
What helped, exactly? 
Rachel was good about explaining how she felt, what she was going through. My daughter tended to hide that. But now you could get a window into the mind of a young person who was going through this, and she was very descriptive about what was happening in her. My daughter was not. That helped me understand what I was seeing on the outside of my daughter. It helped me break through. It just helps you understand it. It's tremendous. 
Think about this. You're trying to raise this kid and get them through high school. And at graduation, she didn't walk across the stage because she freaked out and did something else. She'd go off on standardized tests and be really brilliant, and then couldn't figure out how to do something really simple. And so you're sitting here, scratching your head, going why is this? It makes no sense. 
Because you've been told by mental health professionals, oh, she doesn't have schizophrenia, that's really serious stuff. She's just depressed or whatever. You're sitting here trying to figure it out. When you have Rachel here talking about it, you just go, oh, OK. And it's part of a key that just helps unlock it.

New UN committee member, Robert Martin of New Zealand, first with intellectual disability to serve

From The Associated Press:

One of nine new members elected to the United Nations' persons with disabilities committee has become the first person with an intellectual disability to serve. 
New Zealander Robert Martin (pictured), who suffered a brain injury at birth, was elected to the committee June 14 at the ninth conference on the Convention on the Rights of Persons with Disabilities. 
Martin, 59, is a leader in his country's disability community and evaluates disability support services funded by the government. He is an adviser to People First New Zealand, an advocacy group for persons with learning disabilities. 
The convention, adopted by the U.N. General Assembly a decade ago, is a blueprint for ending discrimination and exclusion of the physically and mentally disabled in education, jobs and everyday life.

Read more here:

Sunday, June 5, 2016

‘I’m not a thing to be pitied:' the disability backlash against Me Before You

From The Guardian in the UK:

When the marketing team behind Me Before You came up with the hashtag #LiveBoldly to promote this story of a young disabled man considering assisted dying, they could scarcely have predicted that it would be used to expose the movie’s problematic message. “Do you really want us to #LiveBoldly or do you just want us to #diequickly?” asked one commenter during a Twitter Q&A session last week with the film’s star, Sam Claflin. He plays Will, a wealthy former playboy who becomes involved with Lou (Emilia Clarke), a kooky misfit in thrift-shop chic. It’s rather as if Thomas Crown had fallen for Amélie. 
The film, adapted by Jojo Moyes from her own best-selling novel, portrays the burgeoning romance between these two apparently mismatched souls. But their differences are not simply sartorial. Lou has full use of her body. Will has been quadriplegic since a road accident several years earlier. Before Lou became his carer, Will decided he wanted to kill himself. Now the Dignitas paperwork is in the post and it seems that Lou’s chipper disposition can do nothing to change his mind. A spoiler alert will be necessary for anyone who hasn’t read the book and so won’t know that he goes ahead with his plan.

The full meaning of the name “Will” becomes clear only after he dies and leaves Lou more money than she has ever seen. It will be enough cash, he says, for her to swap her timid life for adventure. The problem, according to activists who picketed the film’s premiere last week, is this motto applies in this context only to the able-bodied – and comes at the cost of a disabled man’s life. Many of those same activists also used Twitter to take issue with the film. 
The full meaning of the name “Will” becomes clear only after he dies and leaves Lou more money than she has ever seen. It will be enough cash, he says, for her to swap her timid life for adventure. The problem, according to activists who picketed the film’s premiere last week, is this motto applies in this context only to the able-bodied – and comes at the cost of a disabled man’s life. Many of those same activists also used Twitter to take issue with the film. The hashtag#MeBeforeEuthanasia was used by @grindmastrgrant, who tweeted: “I’m not your inspiration porn and I’m not a thing to be pitied or killed off to make the audience cry,” while @JohnBrianKelly wrote: “I have Will’s disability. Stop killing me on film! #liveboldly, fight cripple snuff films.” 
The idea that it is better to be dead than disabled has been seen many times before. In Million Dollar Baby, it is expressed in a mercy killing. In Whose Life Is It Anyway? and The Sea Inside, it takes the form of a quadriplegic man fighting the medical establishment for his right to die. The familiar spectre of the worthless disabled body is hidden behind the apparently valiant struggle of an individual against the state. 
Of course, it would be wrong to pretend that suicide and disability are mutually exclusive. The Sea Inside is based on Ramón Sampedro’s life, while Me Before You is partly inspired by the 23-year-old rugby player Daniel James, who chose to kill himself after a severe spinal injury. (His parents said he was “not prepared to live what he felt was a second-class existence”.) But the screen-time granted to these stories, to the exclusion of more diverse representations of disability, has helped plant in the public consciousness the notion that life is worth less when it resides in a disabled body. 
  “We have so few opportunities in the media to explore disability,” says the actor and activist Liz Carr, who participated in the protest. “But there is a disproportionate number of stories which relate to the ‘problem’ of disability being solved by death. Television and film seem to love those individuals who want to die. They’re less keen to cover the rest of us who might want to live but are struggling to get the health and social care resources to do so.” 
“We have so few opportunities in the media to explore disability,” says the actor and activist Liz Carr, who participated in the protest. “But there is a disproportionate number of stories which relate to the ‘problem’ of disability being solved by death. Television and film seem to love those individuals who want to die. They’re less keen to cover the rest of us who might want to live but are struggling to get the health and social care resources to do so.” 
The screenplay offers one pre-emptive riposte to the charge that it is speaking for all disabled people. “I get that this could be a good life,” says Will. “But it’s not my life. I can’t be the sort of man who accepts this.” Since Will is shown to be strong, determined and uncompromising, it seems clear that the “sort of man” who would put up with a paralysed body and its demands could only be inferior to him. This problem could be tempered, if not solved, by the presence of just one disabled character to provide some contrast and show that suicide isn’t the only option. But there isn’t one. The film isolates Will entirely, stacking the odds so that the choice to take his own life is made to seem like the logical one. 
“When non-disabled people talk of suicide, they’re discouraged and offered prevention,” she says. “Even though it’s legal, it’s not seen as desirable. When a disabled person talks of it, though, suddenly the conversation is overtaken with words like ‘choice’ and ‘autonomy’ and people are rushing to uphold these prized principles whilst talk of prevention and mental health support are rare. Will is not offered any psychiatric support. What kind of message is this that we’re giving disabled people and the non-disabled audiences?” 
Only in its acknowledgement of economic disparity does Me Before You come close to being honest. Accompanying Will to a glitzy wedding, Lou puts it to him that he would not even be talking to her were she not his carer. In fact, she would most likely be serving the drinks at such a function. A working-class woman like her would be as invisible socially to him and his friends as the disabled are to the rest of society. 
Disability in popular culture often exists to allow the able-bodied to unlock their potential. Lou is a beneficiary of Will’s death, not unlike the struggling novelist inBetty Blue, who is inspired to write his next book only once he has smothered his hospitalised girlfriend. But Lou’s story also plays like a chaste, romantic ideal dreamed up by the abstinence lobby. Will won’t be making any sexual demands on Lou. And, like the perfect terminally ill boyfriend in The Fault in Our Stars, he won’t stick around to get old and wrinkly: Lou can treasure the image of her handsome billionaire forever. As love stories go, it’s every bit as creepy as Ghost, which suggested that the perfect relationship was exclusively spiritual, or Pretty Woman, which proposed the idea of prostitution as a short-cut to true love. 
One of the improvements that Will makes in Lou’s life is to open her eyes to foreign-language films. This he does by showing her Of Gods and Men, Xavier Beauvois’s 2010 drama inspired by the French Cistercian monks in Tibhirine, Algeria, who refused to flee in 1996 despite violence from Islamic extremists. The monks made themselves martyrs rather than forsake the area and its people. Will’s choice is entirely symbolic: it prepares Lou, and the audience, for the idea of self-sacrifice. Somehow this manages to feel like an insult both to disabled people in general and those monks in particular. If their murder is analogous to Will’s choice to kill himself so that Lou can have a buffer of wealth, then the stock-price of martyrdom has plummeted since the days of Joan of Arc. 
It’s typical of the soft-pedalling tendency found in Me Before You that it borrows the most evasive element of Beauvois’s film. When the monks trudge off to meet their terrible fate, it is in a blizzard; they fade from view prettily, in contrast to other characters seen having their throats slit. They get a send-off every bit as euphemistic as Thelma and Louise, or Butch Cassidy and the Sundance Kid. Me Before You does the same for Will. One minute he’s lying fetchingly in his bed at Dignitas, the next we dissolve to Lou receiving news of her windfall in a Parisian cafe. This movie which has stood proudly behind Will’s decision to die seems in an awful hurry to conceal what that might entail. Death, like disabled people who choose to live boldly, is nowhere to be seen. 
In the UK, the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Hotline is 1-800-273-8255. In Australia, the crisis support service Lifeline is on 13 11 14.