An App For That? Follow-Up

A couple of weeks ago, I posted about disability-related apps in the Apple App Store. I noted then, as I have a few other times on this blog, that Apple keeps teasing the idea that there are ways you can control all sorts of household devices with an iPhone app, but that it's strangely hard for consumers to figure out exactly how.

Yesterday, I found an additional resource right there on the Apple website. It's a whole subsection of the iPhone Accessories area, just for Home Automation. A few more puzzle pieces fall into place. There are appliances you can buy that connect with some sort of router-like device, which in turn can be controlled through an iPhone app. It’s easy to imagine how this might be really useful to people with significant physical disabilities.

The problem is that there still aren’t many appliances to choose from, and some of them seem more like novelty items than useful utilities. They’ve got lights, door locks, smoke alarms, and thermostats. That’s pretty good, but what window and door openers? What about setting and adjusting clocks, stoves, and ovens from the iPhone? What about emergency response systems?

And I’m still quite puzzled why Apple and other allied appliance companies don’t mention how their products can enhance disabled peoples’ independence. Are they afraid that will stigmatize the whole line … that people would conclude these are all products just for disabled people? Plus, the whole business still seems way too fragmented and cryptic.

What they should do, (Apple, or any other company in the field), is assemble three or four complete packages of products at different price levels. Offer one low-cost package for small apartments, one medium-priced package for an average family house, and an expensive set for bigger houses and more bells & whistles. Pay one price, and get everything you need to set up a living space controlled from an iPhone app … no guesswork, no hidden purchases, total compatibility.

If buying these devices were that simple, I could easily imagine health insurances, including Medicaid and Medicare, paying for them, especially if doing so would reduce the hours of home care a disabled person needs. $1,000 or so for a package of off-the-shelf environmental controls is cheap compared to an hour or two a day of additional home care, in perpetuity.

So, we seem to be getting somewhere with smartphones and environmental controls, but the whole thing still lacks focus. If you’re reading this and you have experience with environmental controls as adaptive tools for disabled people, tell your story in the comments!

Weekly Reading List

Heavy reading from last week, with something a bit lighter at the end ...

Experts say probation understandable for woman who killed disabled daughter
Tony Briscoe, Chicago Tribune - May 18, 2016

4 years in prison for suburban woman who killed disabled daughter
George Houde, Chicago Tribune - May 19, 2016

When I read the first headline, I was dumbfounded. I am fully aware of how popular media gives a huge benefit of the doubt to the perpetrators when people with disabilities are killed by members of their own families. It’s definitely a strong media bias, which is probably both driven by popular sentiment, and supports and validates it. But I was surprised to see the idea stated so explicitly … that it’s “understandable” for a mother to kill her “disabled daughter.” Of course, I was also legitimately worried that the woman would get probation. She didn’t. She’s going to prison, for 4 years, which will almost certainly amount to less because I don’t see this woman misbehaving behind bars. But yeah, she’s not “getting off,” and it seems like her crime has been at least properly categorized. It’s one of those disability issues that I keep trying to sort out, and I’ll probably have more to say about this in the near future.

Why The U.K. Government Has Failed The Disability Community
John McArdle, Newsweek - May 22, 2016

This is an opinion piece, not a news report or an objective feature story. However, I happen to agree with what it says about disability policy and attitudes in the U.K. today, based on what I have read and heard from a few disability activists I know through social media. The best thing about this piece is that it does function as a good summary and explainer of what has been happening in the U.K. these last few years. It’s not just morally repugnant, but actually pretty remarkable and frightening how thoroughly a single population in an advanced Western country has been screwed, more or less deliberately. The only thing missing is any real exploration of how the Conservative government has rationalized all this. I assume that they at least have or had some kind of theory in mind about how disabled people would be better off with benefits cuts and more hurdles to jump in order to keep their reduced benefits. I’m pretty sure it had something to do with a twisted version of the idea of “disincentives.” That’s why I think it’s critical to dig that out, because here in the U.S., disability activists often criticize “disincentives” in our benefits systems, and rightfully so. But if we push to hard and fail to explain ourselves, we could find ourselves one day without disincentives, and without any benefits, either.

Appropriation in the Disability Community: We Are Our Own Worst Enemy
Vilissa Thompson, Ramp Your Voice - May 18, 2016

What Vilissa Thompson writes about here may be the one domain of disability culture that makes me feel like a newbie … full of intense instincts and bright ideas, that I really need to be chipped at, shaved, carved, and maybe a bit shattered by the realities outside my own head. In other words, I don’t fully get all of this. But that’s okay. Just because I don’t completely understand every aspect of intersectionality, just because it’s relatively new to me, doesn’t mean I have to oppose it. I mean, pretty much all of disability rights thinking was new to me once, despite being disabled from birth. And most of it was a less than perfect fit for me, at first. Ideas grow on you, and Intersectionality is growing on me, too. If you’re uncomfortable with this stuff, relax. It’s supposed to be at least somewhat uncomfortable, and that doesn’t mean its wrong. In fact, your discomfort may be a signal that that there’s something there worth knowing.

"You’re Carrie, Y’Know?”: 7 Ways My Nondisabled Friends Get it Right
Carrie, Autostraddle - May 17, 2016

This is a rare thing. It’s a lighthearted disability awareness listicle that bypasses entry-level etiquette, and encourages a slightly deeper level of understanding about disability identity and the kind of social acceptance disabled people actually want.

People Recommend, I Procrastinate

Picture of an old-style portable radio

It happens to me a lot. Friends and relatives recommend some disability-related thing to me, because they know about my interest in disability issues and culture, and I “Like” it, Bookmark it, but don’t watch it. Often it’s because I assume it’s going to be some version of Inspiration Porn. Sometimes it's because the context or genre is something I’m not that interested in. Either way, I procrastinate. I resist jumping on what I perceive to be some sort of bandwagon. Then months later, I finally get around to reading, listening, or watching it, and BAM! I feel like a dope because it’s really great and I could have enjoyed it and talked about it earlier.

A couple of months ago, some friends and cousins tagged me on their Facebook shares of this violin player with disabilities who won an NPR "Tiny Desk Concert" contest:

Gaelynn Lea: NPR Music Tiny Desk Concert

It’s not exactly my kind of music, but it’s close enough that I enjoy it beyond Lea’s disability. And the way it’s all presented says everything that needs to be said without explicitly saying it … which is the best way to “have” your inspiration without it becoming Inspiration Porn.

I will try in future to try disability-related stuff out when people recommend it to me. Also, I’m grateful to Vilissa Thompson, (@VilissaThompson), for revisiting and reevaluating how we define and interact with Inspiration Porn, in a way that allows for genuine inspiration without being gross.

Disability Blogger Link-Up

Closeup photo of a gray computer keyboard with a red wheelchair symbol on the middle key

Time for another Disability Blogger Link-Up!

If you’re new here, the idea is to collect lots of really good, interesting pieces of writing on disability topics, for the most part by people with disabilities. I post a linkup every other weekend, and each runs from late morning on Friday and closes at Midnight on Sunday. Once a linkup is closed, you can’t post to it anymore, but the links all stay active, essentially forever. If you miss one linkup, there will be a new one in a couple of weeks.

Do you want to browse all the past Disability Blogger Link-Ups? Click here to see them all.

As always, to make the links easier for visitors to browse, in the “Your name” blank, please type the title of the article you are posting. In the "Your URL" blank, paste the URL address of the item. Like this:

Name = Title of your article.
Your URL = Link to your article.

Then click the "Enter" button. That's it!

This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, June 3, 2016.

Throwback Thursday

One year ago in Disability Thinking: “Inspiration” Without The “Porn”

I usually remember the blog posts I look up for Throwback Thursday's, but this one I can't for the life of me remember writing. I'll definitely refer to it though when I finally do my long procrastinated "masterpost" on Inspiration Porn.

Two years ago in Disability Thinking: Doctors … Just Relax!

It's time I revisited this idea, too ... The way that insisting our "needs" are so very "special" hurts us in the long run because it allows people and service providers to pass on even trying to deal with us, by saying, "Sorry, we're not trained for that. We're not qualified." Pro tip: Most disabled people can teach you what you need to know to serve them properly.

This Could Work

I’ve been hearing a bit about this new TV show Speechless over the last few weeks. The big news was that it featured a disabled, non-verbal character with a significant physical disability, JJ Dimeo, who is played by an actor with disabilities, Micah Fowler. That’s all I knew until this morning, when I saw this trailer, but the disability casting was a good sign all by itself.

I enjoyed the trailer, and I’m optimistic about the show, but I am worried about a few things.

Picture of an old-style television set with four disability symbols on a white screen

First, I hope the show lasts long enough to explore disability themes beyond the basics. I mean, how much of a novelty is it, really, to show a non-verbal kid in a wheelchair … most likely disabled from birth … who has a real personality and sense of humor? That will probably be a revelation for most viewers, but once they process that, what’s next? It will be crucial for JJ to develop and change as a character. If he arrives fully formed but playing the same gag over and over, while everyone around him changes and grows because of him, then the show will just be spiffed-up formula, and boring as hell.

Second, I worry about how the show handles the depiction of the mother, specifically. Based on the trailer, she’s could wind up being a stereotype, albeit one that isn’t as well known outside disability circles. She’s the Special Needs Mother From Hell who fights so fiercely for her disabled kid that she alienates everyone around her and neglects the rest of her family. There is a bit of truth in the stereotype, but again, it’s almost a cliche already, and I hope they don’t make the main theme of the show. We love mothers,. (and fathers), who fight hard for their kids' rights, but there's a big risk that mainstream audiences will just find her obnoxious, and basically miss the point, unless there's some nuance to her. It's also a short trip even in real life from strong, effective advocate to self-absorbed mouthpiece who forgets who he or she is actually fighting for. I kind of want JJ’s mother to be mostly great, with only occasional relapses into counter-productive yelling.

Finally, I hope they bring in plenty of stories about things other than disability, and that other characters develop and grow outside of JJ’s influence. By the same token, I’d like to see JJ have interests and things going on that have nothing to do with his disability. It’s going to take a light touch to make this work, and that’s rare. Disability is usually ignored on TV completely, or else it’s obsessed over to the point of cliche and burnout. I hope that doesn’t happen to this show.

On the plus side, I love Minnie Driver, and I think her British accent might add just enough quirky other-ness to make her more of an individual than the role might otherwise dictate. I also like the fact that the two brothers, one disabled, the other not, really look like brothers. It also looks like the show will accurately depict the real-life practical and attitudinal barriers disabled people deal with all the time, like access ramps by the dumpsters and cutie-voiced, condescending “helpers.” And of course, the show has authenticity going for it. I hope Micah Fowler gets to have some influence over how disability is depicted on the show, beyond his playing the role.

I really want this thing to work. Either way, I’ll definitely review the Pilot this fall for the Disability.TV Podcast.

One more note: I wish the promo materials and media coverage of this new show would stop referring to JJ's disabilities as “Special Needs.” I hope the show itself doesn’t take that route. Better yet, I’d love it if they made fun of the term, since I am certain the school administrators will use it.

A Bit Of Local Advocacy

A little over a week ago, the local newspaper where I live published an article about a community forum on New York State’s plans for reforming and all but phasing out sheltered workshops. The exact directives and lines of authority are a bit murky, but the article mainly focuses on the idea that due to the Olmstead decision, a well-known sheltered workshop in Plattsburgh, my home town, is being forced to adopt changes that threaten its survival. What caught my eye, of course, was the headline:

Advocates for disabled: Integration not the answer
Tom Marble, Press-Republican - May 5, 2016

“Oh, crap!” I thought. I had a pretty good idea before I even read the thing which agency or type of agency was probably involved, and what the message would be. It was our local ARC, named the Advocacy and Resource Center, which runs a sheltered workshop called Champlain Valley Industries, (CVI). And the article basically recounted a bunch of CVI staff, workers with disabilities, and families saying, in effect, “Please don’t close the workshop. I like working here!” with an added implication that with unemployment a big problem around here as it is, how in heck are these people supposed to get a normal job? How is it an improvement for them to be kicked out of productive work in a safe, sociable environment and then not be able to get a job at all?

The overall point seemed to be that the big bad State is ruining things as usual, sticking their noses in and touting pie-in-the-sky ideas that have no relation to the way things really are.

I'll stipulate that this workshop probably IS safe. It's certainly nothing like those horror story places where people are virtually imprisoned, plucking dead chickens for pennies a day, housed in unsanitary bunk houses, exploited for huge profits. It's not like that. However, it is a highly regulated workplace, cut off from the wider community, and I'm not at all sure socializing is encouraged in the actual workshop. It's more likely that being chatty and having fun is carefully documented as inappropriate behavior, and taken as clinical evidence that these workers aren't ready for mainstream work. But the important thing is that they have something to do and a place to go during the day, which is quite a win-win for everyone ... or so the reasoning goes.

The day the article came out, I think, I happened to be talking or emailing with Robert Poulin, who is the Executive Director of the North Country Center for Independence, where I used to be the ED. He said he was going to work on a response and asked if I wanted to work on it with him. I was happy to do that, and today the Press-Republican posted our “In My Opinion” online. The article will be out in print tomorrow.

In My Opinion: Sheltered workshops not the answer
Robert Poulin and Andrew Pulrang, Press-Republican - May 17, 2016

Incidentally, another local disability activist reminded me last week of a Press-Republican article in 1993, about another community forum where the ARC brought lots of it’s “clients” to protest another effort towards more community integration … in that case a plan to fold the ARC’s buses into a county-wide combined fleet open to everyone. This, of course, would have meant people with developmental disabilities riding the bus with non-disabled people, and just about everyone who spoke were against it, though most of them put it in terms of losing a service, not directly objecting to integration. There is a similar dynamic at work now with the sheltered workshop issue. They don’t directly oppose having a better job or getting paid more, it’s just that they don’t want to loose a thing they have, whatever it is, for any reason.

The reminder of that hearing triggered vivid memories. It was the first time I saw how internalized ableism among people with disabilities sometimes motivates us to oppose things we should not oppose. It’s also the first time I really understood that the “disability community,” like every community, doesn’t have agreed upon opinions about things. The most you can say, I think, is that those of us who are engaged in disability policy issues by choice share a fairly predictable and distinctive set of ideas about disability. Those of us who aren’t engaged, or are engaged only when forced to be, are much harder to predict, and more likely to be swayed by fear of change.

Ironically, we share most of the same negative experiences of ableism and being “screwed” by ham-fisted “authorities,” but we come to different conclusions on what to do about it.

I also want to say that it was a real pleasure to work with Robert on our response.

Weekly Reading List

Confined to Nursing Homes, but Longing (and Ready) for Home
Katie Thomas, Sheri Fink and Mitch Smith, New York Times - May 13, 2016

This article should probably go on a list somewhere of the definitive mainstream examinations of this confusing but absolutely essential disability issue we refer to as “Long Term Care,” “Long Term Services and Support,” and, more pointedly, “The Institutional Bias.” It might be the single most difficult disability policy issue for the uninitiated to wrap their heads around. Some people need help from another person, every day, to do everyday things. Traditionally, most of those people had to go into a nursing home or similar “facility” or “institution” to get that care. In recent decades, more of these people have opted, when possible, to get the same care and assistance while living in their own houses and apartments. The problem is that the only insurance program that pays for life-long care of this kind is Medicaid, and in most states, a web of medical and fiscal rules and regulations wind up making it a lot easier to get institutional care paid for, and a lot harder if you want to stay at home instead. This is the case even though most people on some level instinctively know that living at home is better than being in any kind of institution, even a “nice” one. This is also the case even though on average, Long Term Care costs a lot less when it’s delivered at home, and a lot more when it’s in a facility. There’s really no simpler way to explain the issues. There are too many moving parts, and I haven’t even touched on the prejudices, ableism, and professional biases involved. All of which is simply to say that articles like this are invaluable and should be widely circulated and used to explain the issue.

Disability Activism In The UK: Interview With Merry Cross
Alice Wong, Disability Visibility Project - May 9, 2016

There’s too much information and shifted perspective in this great interview to review here. Let’s just say that every now and then, we in the U.S. should sit down, like Alice Wong does here, and pick the brains of the most engaged disability policy activists we can find in other, comparable countries. Disabled people in the U.K. struggle over somewhat different problems than we generally do in the U.S. Roughly speaking, their service systems seem a little more organized and simple, but also more centralized and therefore easy to cut if the public political mood happens to shift, as it did several years ago in the United Kingdom. In the United States, we have had to fight somewhat less intensively to maintain funding for things, and our focus instead is on pushing the boundaries of basic civil rights, de-institutionalization, and better program design and delivery. Frankly, I’d rather have our battles than what’s happening in the U.K., although there may be something to be said for having more clarity about who your enemy is and what’s at stake. This is a great read.

Dozens chained to railings in Berlin disabled protest
The Local.de, Germany’s News In English - May 12, 2016

It’s good to see disabled people in another country put it on the line for accessibility and civil rights. It’s also fascinating that Germany might pass a comprehensive, ADA-type law without including private businesses. Advocates for that approach say the law would be a suggestion, a road map if you will, and they mean that as a good thing. On the face of it, that sounds pretty weak and craven. Yet, isn’t that mostly how the ADA functions here in the U.S., especially how it deals with accessibility of businesses? There are enforcement mechanisms, but they are very hard to engage, and they only really bite for high-profile “test cases” that are supposed to frighten the smaller fry into compliance. Other than that, most of Title III is a set of suggestions, and a road map for how to do the right thing, (a.k.a., accessibility standards). Mind you, they are excellent, well-thought-out suggestions, and the road map on how to do physical accessibility is absolutely essential. But maybe Germany can figure out a way to do the enforcement part better, because we here in the U.S. certainly haven’t figured it out.

Uber is becoming a monopoly. It should start acting like one
Timothy B. Lee, Vox.com - May 9, 2016

I am glad to see this article on Uber mention it’s sketchy relationship with the disability community and the whole concept of ensuring equal, non-discriminatory service to people with disabilities. Something a bit like Uber should probably play a bigger role in making transportation overall more accessible to disabled people. For while back in the ‘aughts, I made a few attempts at my ILC to talk up the idea of recruiting disabled people who own their own wheelchair accessible vehicles to provide some paid transportation on some kind of on-call basis. We didn’t have a good system for connecting them with riders. There were, as there always are, insurance barriers. Most importantly, in a small city and rural surrounding area like ours, there just weren’t enough people with accessible private vehicles to make a dent. I still think it’s a good idea for some places. But first, companies like Uber have to stop being adolescent brats and start growing up and taking on adult responsibilities, like making sure drivers don’t turn disabled people away just because they don’t feel like bothering.

Black Disabled Woman Syllabus: A Compilation
Vilissa Thompson, Ramp Your Voice! - May 5, 2016

I have a lot of work to do on intersectionality. I think I understand the basic concept as it is typically meant when the term is used, but I’ve only barely begun to draw out the implications for personal behavior, writing habits, and activism. However, anyone can see the value of curated reading lists like this one. At least, anyone should see the value. If nothing else, listing so many pieces about black disabled women adds a lot to the whole of the theoretical library on disability that is available to us. I want to pick something good from this list to start with, and dig in.