iPad: An Assistive Device for a New Age?

Along with all the marketing hype and social hysteria about Apple’s new iPad there have been some murmurings about what else it might be — “else” being “more than a cute toy”  or “more than a huge iPod or big  iPhone”.

Rob, of Fighting Monsters With Rubber Swords, has a young daughter who is about to experience the new challenges of middle school.  Schuyler communicates using an assistive  device, and  Rob writes about how the über-cool iPad may help to bridge a portion of the gap between Schuyler and her peers — a gap which he, like many similar parents, sees widening as time goes on.

The social benefits of an assistive device that looks like something anyone would want aren’t to be minimized, but I was also intrigued by a post written by Asthma Mom (via Rob’s twitterfeed), who imagines how an iPad might be used as a physician’s aid:

Now picture the pediatrician or ER doctor whipping out an iPad, showing you a video of a bronchospasm-induced coughing fit, and saying, “Does your kid ever sound/look like this? Because this is asthma.”

Or imagine if your pediatrician could play recordings from the R.A.L.E. Repository of Lung Sounds, instantly and right there in the examining room, so you can understand exactly what kind of respiratory symptoms to listen for at home.

Yes, you could leave the ER, and check out the videos and sounds on your home computer (and probably will, if you’re sent home with links, or search yourself).  But the potential of the iPad, or future devices like it, exists in its hand-held nature, and its bright, readable screen.

Patient education is a critical component of effective medical management, and one that is increasingly poorly implemented, if it’s addressed at all.  Sending patients home with scantily, or badly, written brochures is not really an optimal approach.  Being able to access visual and audio aids in partnership with a medical educator is a whole different story.

Sharing information on a laptop is theoretically possible, but isn’t practical in most medical settings; they’re too cumbersome and too awkward to hand off from one person to another.  The monitor your doctor increasingly spends his or her time staring into during your office visit isn’t any more sharing-friendly, anchored as it is on a desk or table in front of the doctor.

The iPad changes all that; multiple viewers  can see the screen as easily as a shared piece of paper, and, if a closer look is needed, it can be handed back and forth as easily as a trade paperback.  (Maybe more easily, as there are no pages to manage.)

It will be interesting to see how utilization of the iPad (and its eventual imitators) plays out; those of us with special interests of all sorts might want to keep a close eye on developments.


Fruit and Vegetable Chopper

Preparing food, and particularly chopping food, is a challenge for people with limited fine motor skills or other difficulties using their hands or fingers. Here’s a review of one product that may work for some people who like to cook, but who find conventional slicing and dicing too difficult or cumbersome. Fair warning, though — this device isn’t for everyone.

The principle behind Williams-Sonoma’s “Professional Multi-Chopper” is much like the idea behind the vegetable cutter written about in this previous GearAbility post. Both come with a set of blades and grids, allowing different variations in cuts for food. The multi-chopper, however, comes with a large (8 cup) chamber to collect cut food, and its larger size allows faster processing of larger quantities.

There are a couple of tricks to using it. First, this chopper requires a fair amount of downward pressure, best achieved by pressing flat with both palms on the top and pushing quickly. Some people may find it easier to apply the necessary leverage by setting the chopper below their waists (on a chair, for instance) in order to achieve the necessary force. People with limited arm strength might find that the pressure required is excessive, though.

Secondly, the upper girds can be tricky to remove. There’s a button on the top of the pusher that theoretically makes it easy to pop out the grid, but, in my experience, this simply doesn’t work. Instead, I find myself gently rocking the grid, from the underside, to remove it. This does not really require any dexterity, but does require the ability to hook a couple of fingers under the edge, and move them firmly and gently up and down.

Thirdly, it’s prudent to do some experimenting so that you learn what works best in terms of technique. It would be fabulous if this device could slice a whole onion with one swift push, but it won’t. You’ll find that cutting onions in half first is a much better idea. It’s also important to make sure that whatever you’re chopping is well-seated on the blades, and centered, too. For soft foods like mushrooms, it’s smart to gently press the mushroom onto the blades before pushing them through.

That may seem like a pretty daunting list of caveats, but setting those aside, this is a great tool for rapid processing of a wide variety of foods. One of the grids and cutters cores and sections apples; another one sections lemons and limes beautifully. After damaging my fingers several years ago, I couldn’t do either, but this chopper makes quick work of both jobs. As soon as I learned to use it, I found myself reaching for this device frequently, and now it’s a staple tool in my kitchen.

There’s a helpful video on Williams-Sonoma’s website demonstrating the chopper (and, if you watch carefully, inadvertently illustrating just how difficult it is to get that grid out of the pusher).

What’s Wrong With This Picture?

Well, nothing, actually. Unless you’re a certain type of rabid BBC watcher.

These two are  presenters on BBC’s CBeebies program, beloved of British toddlers throughout the kingdom. That’s Alex Winters on the left, and Cerrie Burnell on the right. They’re new to the program. Cerrie, in case you missed it, doesn’t have a right hand.

A subset of vocal parents have slammed the BBC’s CBeebies forum, claiming that Cerrie’s arm is embarrassing them and may cause nightmares and disrupt the sleep of their delicate small children. This is, one assumes, just one more sign of the current parenting trend which suggests that the longer toddlers are kept from anything resembling reality, the better.

Lucy Mangan, of The Telegraph, rightfully calls foul on these silly ninnies:

Burnell’s arm is likely only to give parents nightmares. It is they who do not want to confront disabilities, not now, not at teatime, not ever. To let your toddler be scared every day that Burnell has hurt herself rather than explain the truth is a failure of parenting, not an imposition by the BBC.

It’s a peculiarity of human development that the smallest and weakest amongst us — notably babies and the littlest children — are generally far more accepting of the realities of life than the allegedly grown-up adults who surround them. Sadly, some of those adults apparently feel that it’s important to change that.

For others, who are perhaps more confused than simply ignorant, and who feel incapable of answering a child’s question (“what happened to the lady’s hand?”), we offer the following child-rearing tip: The best gift you can ever give your curious, enquiring child is the gift of honesty.

If the question is raised, answer it: Ppeople come in all sorts of shapes. Then get on about your business, as your child almost certainly will. Your offspring will be better for it, and so will the rest of the world.

Image from The Guardian, where Carol Midgley also offers a few choice words.

A Toolkit for Cancer Patients

Massachusetts Senator Ted Kennedy’s recently-diagnosed brain cancer has resulted in a flurry of coverage, not only of his personal situation, but of medically-related issues as well.

Among the most helpful is this article from CNN. Senator Kennedy is in a position to acquire the best medical care possible; most of the rest of us must rely on lesser resources. Reporter Elizabeth Cohen has provided a great blueprint for acquiring the best level of care possible.

Post-cancer diagnosis steps outlined in the CNN article include:

1. Get basic information about your cancer
2. Pick a doctor
3. Learn how to read your lab reports
4. Find alternative medicine for cancer
5. Find support groups
6. Find clinical trials
7. Figure out how to pay for all this

The article argues, quite wisely, I think, for following these steps in this order. It’s full of helpful links and well worth checking out.

Above all, every patient, whether a Kennedy or Jane or John Doe, must accept and remember that there is only one person capable of ensuring quality health care for him- or herself. That person is you, the patient. Illness is one of those times in life when knowledge really is power.

Segway Scooter as an Assistive Device

A group called DRAFT (Disabililty Rights Advocates for Technology) distributes Segway scooters through its Segs4Vets program, matching Segways with veterans with a wide variety of disabilities. Segway scooters have a very small ‘footprint’, with a turning radius that is much smaller than that of a power chair. For most users they represent a less-fatiguing, more versatile means of ‘walking’ — as well as one that accommodates a wide variety of terrain.

Best of all, say users, a Segway, unlike a wheelchair, allows face-to-face interaction.

Sounds like a great, feel-good post doesn’t it? Maybe — but it turns out that the obstacles these vets face aren’t the ones you’d expect. Because Segways go much faster than a power chair and appear to represent a greater threat to pedestrians, many cities (liberal, people-loving San Francisco, among them) have banned them. So have other venues: Disney World and at least one Barnes and Noble store in Arizona, among them.

Disney’s argument seems to be that the scooters haven’t been certified as ADA assistive devices; it’s unclear how retailer objections will play out. A Segway disability-use permit — like the parking placards issued by every state — would seem to be a simple, logical solution to the question of identifying scooter drivers with a disability, but hey, I’m only thinking logically here. While the world sorts this out, riders might want to pack a doctor’s note and see if some courteous information exchange can get them to that latte.

Segways aren’s for everyone with a disability. Though they can be modified in various ways, their use depends on considerable motor skills, along with a dose of good judgment. (Speed is increased or decreased by leaning forward or back; forgetting this can have serious consequences.) Those who use them particularly cite the advantages of being able to travel upright for longer periods of time, and the ease of getting where power chairs just don’t like to go. There’s a certain cool factor, too. Unlike a power chair, they’re likely to inspire some admiring glances; this assistive device is coveted by people without disabilities, as well.

Segway image from Flickr

Strain-Relieving Handle for Rollling Suitcases and Bags

If you’re attempting to fly with American Airlines this week, there’s probably nothing in the world that can make the experience better. In the future, though, if you find yourself traversing airports with bags in tow, this device might be your best companion, particularly if you have wrist or hand pain that is aggravated by the handles on rolling bags.

There are quite a few similar handles available, but this is the one I use. Here’s why: the grabber rotates 360 degrees. That means that I can always keep my hand where it’s most comfortable; it makes pulling my bags easy and pain-free.

Someone was really thinking when the attachment was designed, too: the hook and loop fasteners are on both sides of the bar that attaches to your bag handle. That keeps the TravelTow handle firmly in place, but allow you to rotate where you want it.

I use mine nearly everyday; one is attached to my rolling shopping basket. It works perfectly on my rolling computer case, too, as well as on suitcases.

TravelTow Handle Adapter by Lewis N. Clark; available at travel gear stores and various places online.

Wheelchair Canopy for Sun or Rain

shade.jpgSpring rain is falling with a vengeance in many parts of the country, and soon we’ll be contending with the sun of summer. If you use a scooter or wheelchair outdoors frequently, you may be interested in these canopies sold by Diestco. There are three models: one that’s all solid fabric; one that has mesh on the sides and rear; and a third one, just like the second, but with drop-down plastic curtains. (Each available in five colors, for the fashionistas among us.)

Initial installation takes about 20 minutes, according to the website. Mounting methods for several common wheelchair styles are shown, but if your scooter or chair differs, Diestco invites you to describe your needs when you order.

Diestco also offers a variety of armrest bags that look thoughtfully designed, and cupholders for scooters, power, and manual chairs, along with many other accessories.

Disaboom, Take Two

In response to several thoughtful comments by readers about my earlier Disaboom post, I revisited Disaboom recently. Here are my impressions.

Short version: I still don’t like it, for most of the reasons previously stated, and some new ones. Details follow.

I absolutely agree with the commenters who ask “What’s wrong with a site making a profit?” I agree, nothing at all is wrong with making a profit, as long as the owners are upfront about it. Disaboom is. Likewise, I see nothing wrong with a social networking site that observes its own privacy policy, and shares individual information and access only when explicitly permitted to. Disaboom users I’ve heard from say that Disaboom does just that. That’s good.

(Disaboom, at least as of this date, is not making a profit, though. See below.)

But there is a host of other things that still, and newly, bother me about Disaboom. I found the medical information available to be lightweight, poorly edited, and poorly presented. For example, under Conditions: Muscular Dystrophy: Introduction, two paragraphs appear. They’re a slapdash intro to the disease, followed by these lines:

The specifics of these diseases are outside the scope of this discussion, but readers are encouraged to look at the links listed below for further information.

Well, pretty much everything about muscular dystrophy is “outside the scope” of this “discussion”, especially since there are no links below to follow. That’s careless editing, of course, but typical of the general approach to the content. There’s no justification, need, or even any point to having these unsatisfying articles on Disaboom: Type “muscular dystrophy” into your browser’s search box, and you’ll instantly find thousands of articles with more, and more useful, information that you’ll get on Disaboom. Or take the mainstream approach and just go to WebMD, where you’ll find a slew of information well- presented and easily accessed.

Disaboom’s “lifestyle” articles seem equally pointless to me. Consider, for instance, this article: Successfully Support Your Significant Other’s Fitness Goals. Pick up any women’s magazine at your local supermarket, and you’ll find a similar article. Curiously, there’s nothing whatever in the content that is remotely disability-related. What’s the point of putting it on Disaboom? It’s not new art; it has nothing to do with the specific issues of Disaboom’s target market; it isn’t particularly informative. (How do you support your significant other? News flash — be nice.)

Then there’s this article on being a “football widow”. This post does happen to feature people who are living with SCI, but, once again, this advice is straight out of every women’s magazine ever printed. The featured issue, and advice, have nothing at all to do with SCI or living with any other disability. These articles are just slapped-together filler for a site that has little content-commitment to its putative target audience.

Even when there’s a nod to disability issues, it’s often feeble. Consider, for example, this article called 10 Tips for a Romantic, Accessible Valentine’s Date. The author suggests that you phone ahead to make sure your restaurant is accessible — that’s the extent of the relevant “tips”. Otherwise, it’s all suggestions for activities that are in no way disability-specific. If you have a disability that requires it, and you’ve been to even one restaurant since you began living with your disability, you’ve probably already learned to call ahead. You don’t need a lame article on a website to remind you.

What’s the harm, you say? Think I’m being kind of hard-nosed here? Maybe, but articles like these, which are content-poor, but pretend to address the specific needs of a defined population (but don’t) seem cynical to me. Nobody needs to come to a “disability” site for relationship advice that anyone can follow. Implying, by providing content like this, that the human needs all people share can only be met for people with disabilities on a site specific to that sub-group, is mightily offensive to me. Having a disability usually implies a need for some specialized knowledge; it doesn’t remove anyone from the pool of all humans who populate the world.

Perhaps a more serious objection to Disaboom has to do with questionable content that looks a whole lot like blatant public relations blurbs. There’s nothing dishonest about making a profit, but passing off what are essentially advertisements as editorial content is at least a little sleazy. Here’s one article that looks like it’s straight from the Chicago Chamber of Commerce. Or this one, from Scottsdale, Arizona. I believe that “articles” like these should be identified as exactly what they are: ads.

Ads, and PR releases, aren’t particularly useful in and of themselves. Commercial content that isn’t edited, vetted, or critiqued isn’t particularly useful. They’re just enticements or promises. Shouldn’t a site dedicated to the needs and desires of a population living with disabilities do more than reprint uncredited ads? I think so. Otherwise, what’s the point? You can type “Chicago disability travel” and get a whole bunch more information on your own browser in seconds than you’ll get in Disaboom’s PR reprint. Why on earth would you limit yourself to the information on one, self-serving, website? I wouldn’t.

Moving on to a genuinely disability-related topic, Disaboom’s “Consumer Guide to Adaptive Vehicles” isn’t a legitimate “consumer guide” at all. And, surprise, surprise, it’s also self-serving — in this case, the “self” is the National Mobility Equipment Dealers Assn.. Need an adaptive vehicle? Here’s what you should do:

The first step is contacting a dealer or retailer in your area who is knowledgeable about evaluating both your physical needs and the best adaptive technology solutions for your individual circumstances.

When I required adaptive equipment for a vehicle (and later, when I required an adaptive vehicle), the first thing I discovered is that the dealers were the worst place to go. They knew how to sell, but next to nothing about individual needs or options. I was able to get what I needed only by thoroughly educating myself, and then returning to the dealer and ordering exactly what I specified. That’s the consumer advice I’d give everyone. Dealers exist to push what they’ve got to sell, not necessarily to find or provide what you need. This advice from Disaboom is essentially useless; you might as well be reading an ad. Which, of course, is exactly what you are doing.

And then there’s Disaboom’s “Jobs” section. If you believe that Disaboom has, as they claim, a “list of over 500,000 jobs” for people with disabilities, I have a bridge I’d like to sell you. I didn’t sign up, so I don’t know which job site they’ve affiliated with, but it certainly isn’t their own, and your individual chances of finding meaningful, full-time work won’t be any better because you’ve signed up on Disaboom database than it will be on Monster or any other job site.

Disaboom wants you to sign up to bolster their numbers, but they’ve got nothing special to offer you, and it’s dishonest of the site to pretend it does. Claiming that there are “over 500,000 jobs” under the disability umbrella is highly misleading; these are the same 500,000 jobs for which everyone is competing.

The generic information Disaboom provides about employment looks like a poor re-hash of readily available government information. Why not get it directly from the source?

Those are (still) my beefs. Disaboom’s ability to succeed is very much tied into the idea that a huge proportion of people with disabilities will look to Disaboom, and only Disaboom, for information, advice and social contacts. There’s simply no reason for any sensible person to limit him- or her- self to only one “disability” site as an information resource. As for social networking, it’s fabulous for the users, but it’s just another internet bubble that will burst for investors — if it ever manages to reach the point of having any economic value in the first place.

This is an expensive website with little original or novel content. According to the most recent SEC filings, Disaboom still isn’t making any money; it still looks like a tanker to me. Investors, save your pennies. Social users, have at it: You’re at no risk at all, unless you’d really like to know where editorial content ends and ads begin. Enjoy it while you can; I’m still guessing that Disaboom is going to be a black hole for its investors. From my point of view, Disaboom is trying to fill a need that doesn’t exist, and is doing so not-very-honorably.

Small, Inexpensive Camcorder for Sharing Experiences

flip.jpgIf you have a loved one who won’t be able to be with you for part of your holiday celebrations, you may want to rush out and find a Flip video camera. The Flip is a very cool piece of gear; it’s about the size of a rectangular cell phone and it’s incredibly easy to use — basically point and shoot.

But that’s not the best reason to get it. If you want to share holiday joy (or any other experience) easily and quickly, this little critter is your best friend. The Flip comes with an audio-video cable that plugs the camera directly into your television. Hit the play button, and there’s your video where everyone can see it. How easy is that?

At around $99-130 (USD) for the standard model (1 GB of memory), and $120-150 (USD) for the Ultra (2 GB) this camcorder is cheaper than many digital cameras. No, it won’t make cinema-quality video, but it does make terrific memory videos. It’s so small that you’ll never be tempted to leave it at home, and it’s so easy to use that there’s just no excuse not to film away.

If you’re filming for someone like my dad, who’s in a nursing home and finding it increasingly difficult to focus on details, you’ll want to remember to frame people and objects so that they can be identified easily.

After the holidays, we’ll be using ours to snap everyday things that may interest Dad — this would include dogs we encounter, our bad cats at play, odd or vintage motor vehicles, and stuff we see on local outings.

If you’ve got a youngster who may be participating in the holidays from a couch, bed, or chair, you might consider putting him or her in charge of recording the festivities. Judging from reviews on Amazon, kids as young as four can use the Flip, though I’d expect that eight and up is generally more realistic, at least for semi-independent use.

Recording time is 60 minutes; built-in software accommodates Windows and Macs, lets you upload films to YouTube and other sites, and capture frames for still photos. Reviews make it clear that if you’re serious about editing, you’ll need to buy separate software just for that. But that’s getting technical — here at GA, we’re more interested in the social side of things.

Flip is powered by 2 double A batteries; ours came with two cases and a wrist strap. I’ve seen them at Sam’s Club and Costco (though I see Costco doesn’t have it online today). Sam’s sells it only in the stores, not online. Amazon has them in stock, but you won’t take delivery by the 24th. Don’t let that stop you; there’s a whole new year ahead!

First Partial Face Transplant – 2 Year Follow-Up

isdin6.jpegIn November 2005, Isabelle Dinoire, a 38-year-old woman whose face was mauled by her dog, received an historic face transplant at the Centre Hospitalier Universitaire d’Amiens in France. Two years later, her doctors have published a follow-up study of her case in the New England Journal of Medicine.

According to the NEJM article, Mlle. Dinoire “the patient is very satisfied with the results of the transplant”. She is able to eat, drink, and speak normally; it is said that, with make-up, her surgical scars are no longer evident. The results do appear to be remarkable:

isdintriple.jpeg

The picture on the left is NOT a post-transplant image; it’s from 2001, four years before the face transplant, when Mlle. Dinoire was 34 years old. The middle picture is from November, 2006, one year post-transplant. The right picture is of Mlle. Dinoire in June, 2007, eighteen months post-transplant, showing her natural face, without make-up.

isdin-chart.jpegThe post-surgical journey has been difficult. Mlle. Dinoire has suffered several bouts of rejection and one of kidney failure. She has battled infections; she must, of course, take immune-suppresents for the rest of her life. The return of functional abilities has exceeded expectations, though. This chart (left), from the New England Journal of Medicine, tracks the changes throughout the first six months; her abilities now far exceed those noted here.

isdinpostop.jpegMlle. Dinoire’s case is controversial for many reasons. One of her doctors initially reported that she had attempted suicide; Mlle. Dinoire herself confirmed this in an interview with a London newspaper. Her injuries occurred when her dog was trying to rouse her from unconsciousness following the drug overdose. (Her donor did commit suicide, adding another layer of emotional complexity to the case.)

Mlle. Dinoire, a single mother, has a history of depression, and had been unemployed for a year prior to the incident. Criticism has been leveled at her doctors, who, some feel, may have chosen a particularly vulnerable patient for this historic operation.

Long-term, the physical problems alone may prove overwhelming. Notes The Washington Post:

Maria Siemionow, director of plastic surgery research and training at the Cleveland Clinic, which has been planning to do face transplants, expressed concern about Dinoire’s “unexpectedly aggressive immune response.” Scientists need better ways to prevent rejection of large, complex tissues such as faces, she said.

Siemionow, along with others, also expresses concern about the psychological implications; no psychological study has been published in connection with Mlle. Dinoire’s treatment.

isdin-doc.jpgBritish filmmaker Michael Hughes has made a documentary of the surgery; Mlle. Dinoire allegedly signed a deal for movie rights to her story earlier this year, netting (according to one account) over $400,000 (USD). The Hughes documentary is reviewed here (in French).

Whether Mlle. Dinoire’s pioneering venture will prove worthwhile over time remains to be seen. The potential scope of this experiment is breathtaking, yet it cannot help but recall the innocence and irony of Miranda’s words in Shakespeare’s Tempest:

O brave new world
That has such people in’t!

Related:

The Tin Noses Shop

The Origins of Plastic Surgery