How We All Became Disabled, but We're Still Not All Connecting

[kestrell]

How We All Became Disabled, But We’re Still Not All Connecting

"Stay connected" is what we've been constantly advised in 2020. Those two words assume a level of privilege. They assume everyone has economic access to the technologies we rely on to be connected in the first place. Yet there are still too many people who can’t afford those technologies, and often they are the very people who need them most: seniors and people with disabilities.

This is brought home to me every time I hear that other catchphrase of 2020, “the new normal.” I feel a little guilty saying this, but that phrase still cracks me up. I'm a blind person with a hearing impairment, a compromised autoimmune system due to rheumatoid arthritis and fibromyalgia, and migraines.

So, even before coronavirus, traveling was challenging, and crowds represented the chance of catching something from which it would take weeks or months to recover, worries shared by friends with disabilities. We also share a slightly warped sense of humor, and the joke for 2020 has been, “This new normal looks a lot like my old normal.”

Worrying about how you are going to accomplish everyday tasks? Check. Being stuck at home? Check. Spending large amounts of time on the phone and online trying to get the basic supplies and services you need? Check. Worrying about people who go around as if they don't know the meaning of the word “contagious”? Check.

What does feel different is all the nondisabled people who have suddenly found themselves sharing these same concerns, with many of them slowly beginning to realize what it's like to live with a disability.

About this time of year in 2006, I had recently graduated from MIT after completing a master’s thesis titled "Decloaking Disability: Images of Disability and Technology in Science Fiction Media." In it, I discussed how we can use science fiction stories to learn about cultural attitudes toward both people with disabilities and technology: what do we believe technology should be used for? And how do people with disabilities view what we want technology to do for us?

Looking back, I thought that my focus on disability and technology, being at MIT, and my own experience with writing and blogging and using technologies for people with disabilities gave me some clues into what kind of technologies I would be using in 2020.

I had no idea at all.

I would never have imagined that in one year, Steve Jobs would announce the release of the iPhone, a device which has radically altered the lives of thousands of visually impaired people. Most sighted people have no idea of what a blind person can do with an iPhone. We can send and receive texts (with emojis), take photos and use computer vision to get a description of what’s in the picture, take a picture of a sign, or a menu, or a piece of mail, run it through OCR, and have it read to us. We can surf the net, read an ebook or an audiobook, borrow books from the public library, get step-by-step directions to a destination, play music, podcasts, course lectures, accessible games, and streaming shows, many with audio description. Users can even type and read braille on their iPhones by connecting a portable braille display.

Then there are virtual assistants: Siri on my iPhone and Alexa on my Echo Dot. (They actually get along too well: sometimes they are just responding to each other while totally ignoring me. I think, Yup, this is the singularity). There are also less visible technologies such as machine learning, the cloud and the semantic web, doing the heavy lifting behind the scenes that make all these other technologies possible.

Some of the simplest devices, such as the Amazon Dot, seem pretty affordable: only $25 on (frequent) sale. Amazon will ship it to you for free and their disability helpline will talk you through setting it up.

Yet for many people with disabilities -- including seniors who are experiencing loss of vision, hearing, or mobility -- $25 is not an affordable price. A smartphone is out of reach, let alone the monthly cost of the high-speed Internet service required to use these technologies, if their dwelling even has access to high-speed Internet.

Before we can access a device, we need to be able to afford it. In the U.S., funding assistive technology happens in K-12 education or from vocational rehabilitation agencies. According to the American Foundation for the Blind's research on how students are being affected by Covid-19, learning and working from home has resulted in many students and employees losing crucial access to the assistive technologies.

People assume that health insurance would assist in buying necessary devices such as accessible phones, tablets, and laptops. The reality is insurance companies frequently deny requests, usually for one or more of the following reasons.

1. The device is not “single-purpose,” and thus could be used for something other than a single medically-related need.

2. The device is a “luxury.”

3. The device doesn’t qualify as assistive technology because it is a mainstream technology, rather than a “special” technology.

These reasons no longer reflect the reality of assistive technology.

1. Assistive technology as a single purpose device: is anything a single purpose device anymore? Your phone isn’t just for phone calls, your TV isn’t just for television, and Alexa isn’t just for ... hey, that’s right, Alexa actually started out as [a news reading service for blind people, that Amazon purchased 14 years ago to compete against Siri][ivona]. Single-purpose devices are just so…twentieth century.

2. Assistive tech is a luxury: this makes me the most angry because, for anyone who is disabled and homebound, assistive tech is a lifeline. This was true before we were all stuck home due to a pandemic. I know a wheelchair user who requested a smart plug to control an outlet she couldn’t reach. When insurance tells a wheelchair user that a $10 smart plug is a luxury, you begin to wonder who is making the decisions and how much they really know about assistive technology.

3. Mainstream vs. "special" technology: This perspective is at least twenty years out of date. Back in the 1980s, special technologies had to be designed for blind and visually impaired users to user older inaccessible user interfaces. But the iPhone showed that a seemingly entirely visual interface could be made accessible: with text-to-speech and speech recognition built in to every model. The iPhone SE cost far less than a “special” device.

One can’t help but wonder who is responding with these denials of assistive technology. I mean that quite literally: who is making decisions regarding assistive technologies for people with disabilities?

That remains unspecified, along with whatever the process is for making evaluations and recommendations.

I’ve looked on the member portal of my own health insurance company, and it contains no definition of assistive technology. Ditto for the consumer handbook. If people with disabilities don’t have access to these definitions, we can’t argue against a denial.

In addition, the individual making a request for assistive technology is never given an in-person evaluation by someone who is trained in evaluating individual needs and making informed recommendations for assistive technology. These certified professionals are referred to as assistive technology professionals (ATPs), but insurance companies, as far as I can determine, neither employ them nor instruct their employees, who work directly with consumers and are supposed to be supporting their health needs, anything about assistive technology.

As a person who doesn’t drive and knows nothing about cars, I don’t consider myself qualified to make decisions about whether someone else really needs a car, or what kind of car they should buy, or what features would best suit their needs.

There is evidence that health insurers are not making qualified decisions regarding assistive technology. That ignorance means many consumers failing to get the equipment that they need and many dollars being wasted. According to a 2017 report from the National Academy of Sciences:

Assistive products and technologies hold promise for partially or fully mitigating the effects of impairments and enabling people with disabilities to work, a mismatch sometimes exists between the products that are covered by Medicare and other insurers and those that would best meet the needs of users. New assistive devices and technologies are advancing faster than reimbursement systems and clinician education, which may limit access to these devices and training in their use.

Even when the insurer agrees to purchase a device for a consumer, there is too strong a possibility that the device will be the wrong thing. Insurance companies don’t keep up with the state of assistive technology. It's evidenced by the out-of-date forms insurance companies use. The final decision will be something that matches the form, rather than match what the person needs. Most people with disabilities end up purchasing assistive technology, even something as simple as a mobility cane, with money from their own limited funds, because they require a specific version of mobility cane, and the wrong kind is worse than useless.

I’m not talking about highly specialized, fantastically priced devices here: the crucial starter item is a phone. There are a significant number of seniors and people with disabilities who do not own an accessible phone. Their visual acuity decreases to a certain point, chronic conditions such as arthritis or Parkinson’s make it difficult to press the buttons, or maybe they need a device with accessible volume controls to compensate for impaired hearing.

You may be thinking, Aren’t there government programs that make sure people with limited incomes have access to phones? Yes, the FCC's Lifeline program is supposed to provide people with low income access to phones, but it doesn’t guarantee that a disabled person can use it.

Consider this FCC report from early in 2019, before widespread concern regarding the Coronavirus pandemic.

“According to the study, only 17% of the phones provided to low-income people through the Federally-subsidized Lifeline program offer access to Wireless Emergency Alert Notifications, and only 26% of the Lifeline phone include text-to-speech, an accessibility tool which allows visually impaired people to hear what appears on the phone's screen. In addition, accessibility features for people who are deaf or hard of hearing are even more scarce: 58% of Lifeline phones lack the video calling features necessary for ASL users, and most phones lack hearing aid compatibility.”

Imagine spending the past year, the entire pandemic, without a phone: you can't get information about Covid-19, you can't talk to your doctors, you can't talk to a friend or family member when you are feeling lonely, you can't order your groceries or get your prescriptions delivered.

So that’s the state of accessibility, too.

The science fiction writer and technology activist Cory Doctorow, who I got to know when he released DRM-free (thus screen reader accessible) ebooks, captured this in “Unauthorized Bread.” In this story, a refugee ends up living in a government-subsidized housing, but she only has access to malfunctional technologies installed in her apartment. She and her fellow residents have their entire quality of life compromised by the digital ghetto in which they live. Their battle becomes what Cory refers to as “technological self-determination.”

Assistive technology is crucial for our self-determination. We've all learned this year how many aspects of our quality of life rely on technology: education, employment, food delivery, socializing, relationships, and healthcare itself -- and yet access to that technology is still framed, not as a right, but a privilege for those who can afford to pay for it, or even a luxury item for those who can afford the good stuff. Even our much-related slogan, “Stay Connected,” takes for granted that everyone has access to the tech now required to be connected.

Many thanks to jesse_the_k for her editorial wizardry.

Comments

[negothick]

Kes, this is brilliant--as I would expect from you. It needs to reach a wider audience. I'm not sure of the mechanics of online publishing, but at the very least it needs to be on something more open to the public than DW. What about reaching out to Cory Doctorow--does he have a platform that would be appropriate?

[negothick]

Also, thank you so much for pointing me at "Unauthorized Bread." As usual with Cory, it's totally believable and uplifting!

[bibliofile]

Excellent essay.

Gah! That so much of it is so.

(Noting that, for health insurance, single payer or even a public option isn't enough change for some things. I wish people realized this more.)

[duskpeterson]

The difference between mainstream and specialized can be really stark. For example, the epub format was developed with the help of the blindness community, so it was accessible from the start. Eventually, it became one of the formats available at Bookshare.org, with the result that Bookshare now has nearly a million titles for print-impaired readers, most of them submitted by publishers who created the epub e-books for their sighted readers. This massive proliferation of library reading matter for print-impaired readers wouldn't have been possible without epub being handy for both disabled people and nondisabled people.

By contrast, braille has no useful application for sighted people. From the time I became visually impaired, tech people have been promising a cheap braille display. Currently, the cheapest braille display is about $500, which makes it out of reach for most us.

OCR was developed for blind folks; it proved useful for sighted people too, so now it's dead cheap. Braille books aren't useful for sighted people, so they remain expensive.

I could go on and on. In a word, requiring accessible technology to be specialized for disabled people is simply a way to guarantee that most of the people that the tech is made for won't be able to use it.

[kestrell]

Trust me, I really wanted to mention examples of how mainstreamtech has benefited from the early adoptionof new tech and formats by visually impairedusers--this is one of my favorite rants--but I felt I needed to keep this article clear and concise.

So this article is the first of three, and I'm going to post the next one in a couple of weeks.

Would you like to be one of my beta readers?

[badgerbag]

Hey Kestrell, Cory forwarded me your email, and I think we know each other slightly from SF cons. Maybe from Potlatch or WisCon? I'm LIz and am a wheelchair user. Anyway, I have been talking and blogging about some of these issues over the years, especially focusing on the need for free and open source software and hardware for assistive tech. But, I have an unrelated full time job so it's not something I've been focused on. I can poke around and see if there is an organization doing this kind of work. When I talk about it, I get pointed to a bunch of people in similar situations to me, like other disabled individuals doing one off projects, or accessibility design professors. Actual organizations serving disabled and senior communities tend to work with what is already available. I find it hard to know where to start. But, I agree with all you say here. What we need is hardware and software and devices that are cheap, flexible and adaptable, rugged, easy to use and I also think we may not get that without government level backing, which we can't even manage to get to fund already existing, simple devices like canes for people who need them. On top of the design and manufacturing and distribution of assistive tech there is also the issue of maintenance and support. So my message to people has been, connect with the people in your life, family, friends, neighbors, local community centers, and do what you can to support their needs, like a sort of tech consultant and support activist.

Following your blog with interest!

[kestrell]

Hi, Liz!

And thank you for answering a couple of my questions, especially the one as to whether there are any organized groups specifically working in this area, and I agree that there probably needs to be govenment guidelines/involvement before this improves.

Are there any specific open source projects you can point me to? I've recently started using GitHub, and it seems as if that must provide a good way to find such projects, but the site is so vast, it's difficult to locate specific communities or projects on it.

Apologies, I'm having a seriously fuzzy-minded morning--I should probably go have a food now.