Disability Futures

Ever since I first saw Dakota Fanning guest star on the CSI episode “Blood Drops” back in 2000, I have been a big fan of her work. She is obviously naturally talented as an actress, and I’m always impressed with how she takes on each character.

But, as someone on the autism spectrum, that’s not the only reason I’m excited to see her latest movie, “Please Stand By.” I’ve always told my friends and family that I would be really interested to see how Fanning would take on the role of someone on the spectrum. I would be interested to know how she would portray a meltdown or overstimulation, as well as dealing with everyday life. And in this next film, she does just that.

If you’ve never seen a TED Talk, it’s time to start. TED Talks are a way for people with brilliant ideas to communicate with the rest of the world and, in most cases, inspire them to take action. The goal is both entertainment and increased awareness of a problem and its potential solution.

This one had me laughing before the first 30 seconds were up.

In this talk, entitled “Dear Society…Signed, Autism,” Daniel Share-Strom, a 26-year-old man with a communication degree who happens to have autism, awakens us to the fact that people on the autism spectrum are often judged by how far they are from “normal” instead of by what their strengths are.

Today’s episode is on autonomy with Kim Sauder, a blogger and PhD student in critical disability studies who is passionate about disability rights, activism, advocacy & scholarship. Kim and Alice talk about privacy, sexuality, decision-making, disabled bodies on display in healthcare settings, the delights of non-compliance, and of course, ableism. Basically, a lot of good stuff.

Transcript

Using Apple hardware and apps as an effective tool in the toolbox 

Address delivered to the National Council of State Agencies for the Blind at its conference in Greenville, South Carolina, 17 November 2017 

It’s an honour to have been asked to speak with you today. By way of background, I have a foot in two distinct camps that handily co-exist on this occasion. I’ve been a senior manager in, and ultimately Chairman of, New Zealand’s blindness agency. Our situation is a little different, in that it’s a charitable organisation receiving some Government funding, but also with many services dependent on public giving. So I know what it’s like to identify enormous need, while having to live within budgetary constraints. I know what it’s like to have to make those difficult calls about programmes, resources and staffing.

In the other camp, I’m also a shameless geek. I share the enthusiasm your tech people have for the power this technology has to change the lives of blind people for the better. I live it, and through Mosen Consulting, I write about it, train in it, talk to mainstream developers about it, and advocate for it. I suspect I’m also here because, while I own a lot of technology and enjoy geeking out, I have a reputation for not mincing my words, and am no one’s fan boy. I’ve been a consumer leader and advocate, and I know that the benefits we now enjoy didn’t fall out of the sky by magic. They’ve been hard-won, and they must be safeguarded with vigilance. So, here I am, a geek who can do a bit of public speaking and identify with some of your challenges. Today, I want to give you some straight talk about the many exciting, game-changing aspects of Apple technology, while making it clear that there are challenges. I may send you away with some homework, because I believe that those of you here today may be uniquely placed to assist the community to overcome some of those challenges.

As the old cliché goes, the only constant in the world is change. And there’s no better, more dramatic example of this than technology. For those who make decisions about resource allocation, it’s not just that the technology itself is being updated at a frenetic pace, it’s also that the rules of the game have changed.

I’ve been asked to address Apple hardware and apps as an effective tool in the toolbox. It’s an important topic, because a smartphone, based on the current state of accessibility, isn’t always the right tool. Just as you wouldn’t use a chainsaw to hammer in a nail, it’s important that we set realistic expectations about when a tool like an iPhone is the right one, and what risks may exist when using one.

With 24 hours in the day and so many podcasts to choose from, why take time to hear The Blind Side? 

If you’re blind, you have a family member who is blind, or you work with blind people, then you’ve found the podcast that’s our place, for our issues. 

Mainstream media pays scant attention to blindness at all, and it’s hard to find current affairs content that examines the world from the blind side of things. Settle back and enjoy a professionally-produced, engaging podcast covering the diverse experiences of life with blindness. 

The Blind Side is a podcast hosted by Jonathan Mosen, that includes news, interviews, technology and lifestyle content. If it’s important to the blind community, it’s important to The Blind Side. 

The news and interviews you’ll hear on the show are not all about blindness-related topics, but we’ll always look at all the items we cover from the unique perspective of blindness. 

It was around 7 p.m., in the midst of the cafe’s regular silent hours. “No talk!” proclaimed the chalkboard in the corner that listed the times when speaking was forbidden. On the walls, cartoon illustrations demonstrated how to sign phrases such as “What would you like to drink?” and “Check, please” in Chinese Sign Language (CSL).

Behind the counter, proprietor Zhang Long, who is deaf, smiled with pride as he cleaned the cafe’s shiny espresso machine. When his business partner, Liu Jing, walked in, Zhang spoke to her using only his hands.

Although Liu can hear, she grew up speaking CSL with her deaf parents. She bakes desserts for the cafe and helps translate for Zhang.

One of their goals for the cafe is to increase awareness of deaf culture. Liu said they plan to teach weekly sign language classes and give talks about the deaf community.

The cafe was the dream of both Zhang and Liu, but it is also indicative of a larger trend in China in which deaf people have grown more assertive about achieving more-ambitious goals. Over the last 10 years, “the deaf community has become much more empowered,” said professor Yang Junhui, a senior lecturer in deaf studies at the University of Central Lancashire in England.

Across the country, thousands of children attend private schools through publicly funded voucher programs and education savings accounts, with states giving money directly to parents to spend at a school of their choice.

But parents sacrifice legal safeguards if their child with a disability attends a private school through these programs, according to a report released Thursday by the Government Accountability Office. Protections that require public schools to provide speech therapy, tutoring and specialized education plans do not apply to private schools.

The GAO report found that many states with voucher programs and education savings accounts do not inform parents of students with disabilities how their rights change when a child transfers to private school through a choice program. About half the private schools the GAO surveyed offered little or no information about their special-education services on their websites.

Deej, a documentary that follows you through high school and the very beginning of college, premiered this fall. What do you want the film to accomplish?

I want the film to dispel societal stereotypes and misunderstandings and to promote inclusion—in family, school, employment, and community—for all of us who communicate alternatively. I’ve estimated there are as many as 750,000 nonspeaking autistics in America. The dominant culture’s production of autism is not my experience of autism. As the film’s subject, narrator, and co-producer, I try to unearth the discrepancies between the outsider’s perspective and the nonspeaking autistic person’s private insights.

What does “inclusion” mean to you?

I think you’ll see that, for me, inclusion means having a voice in one’s life. Nonspeaking autistic people rarely—if ever—do. Instead, they’re usually stored away like unwanted furniture.

What is one of the more harmful stereotypes about nonspeaking autistic people?

Our silence makes some estimate us as incapable, and soon we are left out of anything meaningful. Before I learned to read and write, people thought I had no mind.

If you’ve ever fallen out of your wheelchair, you’re probably familiar with the view from the floor. It offers a different perspective to consider a room: Couches look rather tall, socks that have disappeared for a few months lie in direct sight, or for Rupaszov — a former fire fighter turned wheelchair-using hit man in the Hungarian action film Kills on Wheels — a tumble to the floor offers the perfect shooting angle to the bleach blond gangster he’s been tasked with eliminating.

The scene, in which Rupaszov (Szabolcs Thuróczy) is carried down a flight of stairs by a pair of burly body guards, before dispatching said body guards with a few well-placed bullets and finishing the job from the floor, is emblematic of Kills on Wheels as a whole: It’s fun, fast-paced, violent, and doesn’t shy away from an unvarnished depiction of the details of living with a disability.

Rupaszov’s superhero level shooting skills are contrasted with his escape from the same house: Pushing up a steep ramp he has to stop a few times to catch his breath and rest his arms. Whether or not he and his waiting apprentices, Zoli (Zoltán Fenyvesi) and Barba (Adám Fekete), are able to evade the police boils down to how quickly they are able to transfer to and from a car and break down their wheelchairs. It is not the quickest process. “I could fry an egg in less time, for fuck’s sake,” grumbles Rupaszov as Zoli fumbles to get the wheel onto his chair amidst the sound of blaring sirens.

The film centers on Zoli and Barba — two young men who are roommates in a group home for people with physical disabilities. Zoli has spina bifida, and Barba has cerebral palsy. Both come off as typical young folk. Zoli is constantly on his phone, listening to house music and worrying over social media posts, while Barba lives in a constant state of nerves over being prepared to “meet some chicks.”