This short Times documentary about a couple–both of whom have muscular dystrophy–who fell in love and married is sweet and matter-of-fact. There’s just one problem: they are living in a Connecticut acute care hospital. Does Connecticut not have the resources to enable them to live together in the community? I understand that they both use ventilators, but this is 2014: people with ventilators living at home are not a rare species anymore. Of course, I don’t know what their specific circumstances are. They may choose to live at the hospital because they feel safer or because the quality of care is high. But I imagine it’s no simple matter for them to get out to a movie or restaurant. I hope somebody has at least discussed community living with them.
I’m in the final stages of purchasing a new van (a 2014 Honda Odyssey EX, if you’re curious) and I’m pretty excited about the opportunity to ride around in something that was manufactured in this century. Of course, I’d love a self-driving vehicle like the prototype Google has unveiled in the video below:
It’s a cute little thing and the clearest indication yet of what the future of transportation might look like. In another decade, I might be able to give up my van in exchange for a driverless taxi that is wheelchair accessible. Google certainly understands the powerful implications of this idea; two people with visual impairments are included in the video. Imagine how something like this could revolutionize paratransit systems that are currently understaffed and unable to operate around the clock, particularly in rural areas. For many people with disabilities, this technology could mean the difference between isolation and independence.
Vox, Ezra Klein’s wonky news venture, always provides me with interesting lunchtime reading. For example, here’s a post highlighting a clever British ad campaign designed to help avoid awkward social interactions with people with disabilities. I can particularly identity with the kind of interaction depicted in this ad:
So remember, folks, don’t bend over when you’re speaking to me or I’ll think you’re a condescending ass.
Kudos to Vox for covering disability issues and I hope we see more posts like this in the future.
I’m late linking to this, but Harold Pollack has a great post in Wonkblog about how Medicaid forces poverty on people with disabilities. This is common knowledge in disability policy circles, but most people don’t grasp how difficult it can be to maintain Medicaid eligibility and have any semblance of financial independence. It’s common for people with disabilities to hide assets with a family member or keep income off the books to ensure that they don’t lose access to vital services. Those of us who buy into Medicaid are allowed a bit more leeway with our finances, but we still must be careful.
Congress really should revisit the strict Medicaid income and asset limits for people with disabilities. But as long as Medicaid is regarded as a program for only the poor, policymakers won’t be eager to change the status quo.
I’m currently debating whether to purchase a new van. My 1999 Dodge Caravan still runs well, but 15 years is a long time to hold onto a vehicle. I worry that it could suddenly fail without warning, forcing me to scramble to find a replacement. A new van would be a significant expense ($45,000-$60,000), but I might qualify for some assistance via a Medical Assistance waiver. I’m also fairly certain that my next van will be a Toyota Sienna or Honda Odyssey. The Dodge has been generally reliable, but its hunger for new parts began rather early in its lifespan.
Of course, I’m fortunate to be in a position where I can reasonably afford a new vehicle. For most people with disabilities, an accessible vehicle is a luxury item that is too expensive to even contemplate.
Switzerland is planning to host the first “Cybathlon”, an athletic competition for people using prosthetics or other augmentive aids. It will include a wheelchair race, an exoskeleton race, and a (gasp!) brain-computer interface race. A better name for this event might be “Meet Your Future Gimp Overlords”. I’m curious to see what kind competition this attracts and whether it will be broadcast on-line. The organizers don’t seem interested in placing any restrictions on the kinds of technology that can be used, so the Cybathlon could be a showcase for the truly cutting-edge.
Attention corporate sponsors: I will gladly wear a sensor cap emblazoned with your product logo as I compete in the BCI races. All I require is a well-appointed training facility and a personal masseuse (whom I interview and hire, of course).
This week’s must-read is a devastating article in the Times about the exploitation of several men with cognitive disabilities who, until recently, lived in Atalissa, Iowa. These men were brought to Iowa from Texas institutional facilities decades ago to work in a turkey processing plant. The company boarded the men in an abandoned schoolhouse and paid them $65 dollars per month to work long hours doing dangerous work that left many of them with serious health problems. At the schoolhouse, they lived in squalor and were treated like children by the live-in supervisor and frequently abused and neglected. They were never given a choice as to where they might live or what other work they might want to do. This mistreatment continued for years despite family members and town residents asking the state to investigate the matter.
The disability rights movement has accomplished a great deal, but like most civil rights movements, its victories have not been evenly distributed. The true scope of the abuse these men suffered was not discovered until 2009. Several townspeople quoted in the article suspected something might be wrong, but said nothing. Some of that can be attributed to plan old Midwestern reticence, but it can also be attributed to the unconscious marginalization of these men because of their disabilities. Nobody intervened because nobody really wanted much to do with these guys. And those attitudes persist far beyond Atalissa’s borders.
The Arkansas legislature is currently debating whether to continue the state’s expansion of Medicaid for low-income children and adults. Since this is Arkansas, a bloc of Tea Party legislators has been blocking the extension because it might make the lives of poor people just a bit less miserable. One of the opposing legislators is Josh Miller, who also happens to be a Medicaid beneficiary because of a spinal cord injury sustained in an auto accident.
In interviews, Miller justifies his opposition to the expansion with claims that it would benefit people who don’t want to work or who want to abuse prescription drugs. He also is terribly concerned that the federal government will default on its obligations and he doesn’t want to make promises to his fellow Arkansans that can’t be kept.
People with disabilities span the political spectrum and Miller and is entitled to his opinion. But his stance that some people “deserve” assistance while others don’t is disheartening, particularly given his own experience with public assistance. He isn’t the first person with a disability who wants to protect Medicaid for people like himself, yet his position as a legislator gives him a unique opportunity to shape the programs that benefit him so extensively. It’s an opportunity I would love to have. If he chooses to use that opportunity to deny health care to 100,000 people, that’s his right. A day may come when Miller’s fellow legislators want to save money by trimming benefits for people with disabilities. If that happens, will Miller be as quick to side with his conservative brethren?
I’ve written previously about Jillian Mercado, a fashion blogger who also uses a wheelchair. Mercado recently applied for a modeling gig on a lark, so she was more than a little surprised when she got the job. Mercado is featured in Diesel’s forthcoming ad campaign, which will run in magazines like Vogue and Interview. Here’s the photo of her and artist James Astronaut:
Mercado looks amazing and I suspect she’ll get many more gigs as a result of this campaign. More importantly, her experience is a powerful antidote to the low-expectations game that so many of us gimps play. We are often hesitant to put ourselves out there because we fear rejection and/or looking silly. But as Mercado demonstrates, sometimes just showing up leads to the completely unexpected. Now, if you’ll excuse me, I must submit my resume to Ezra Klein’s Project X.
After using the iOS 7 switch interface for a couple weeks, I’ve gotten pretty adept at navigating various apps. But one element of app design really frustrates me. Some apps include a menu that can be brought up with a tap on the screen. Unfortunately, the menu disappears after a few seconds. Those of us who use switches don’t have enough time to activate menu items before the menu vanishes. This design flaw is prevalent in magazine and reading apps like the New Yorker and Instapaper.
From an accessibility standpoint, it would be better if menus remain visible until dismissed with another tap (the Amazon Kindle app does it right). As app designers become more cognizant of basic accessibility principles, problems like this should disappear. Komodo OpenLab, the maker of my TECLA Shield, has great resources on how to make apps more accessible.