GearAbility is on hiatus for the time being, owing to serious medical problems my dad is experiencing. Posts will return as soon as feasible.
Lately I’ve been reading two blogs that each offer an unusual glimpse into an experience with disability. A great majority of the thousands (millions?) of blogs on the Internet deal with the ins and outs of everyday life. These personal blogs are a long-standing tradition (as long-standing, at least, as things go in cyberspace), and certainly have their place. The two blogs under discussion today, though, have a much narrower focus.
Each one deals with a specific experience, and sticks closely to the topic at hand. Each has a great deal of practical information to offer others who are going through similar experiences. I think they’re good enough to be considered ‘gear’ — part of the tool kit that makes life work — as it’s loosely define it here at GearAbility.
Steve Kurzman’s blog My New Leg details the process he’s going through as he replaces and adapts to a new prosthetic leg. As of today, Steve is the only contributor, but he’s put out a call for contributions from others who can write about any of the following:
- your recent or upcoming amputation or surgical procedure,
- getting your first prosthesis, or a “new leg”,
- trying out new feet, knees, or other components,
- learning how to work well with your prosthetist,
- your ongoing thoughts about your amputation, prosthesis, and what it all means,
- or your own idea — let me know!
Limb is potentially a great resource particularly for anyone facing the daunting process of acquiring and fitting a prosthetic device for the first time. Steve’s posts do a fine job of emphasizing the importance of a constructive collaboration between prosthetist and the person who wears the prosthesis, and he offers some useful tips about how to get the job done most effectively.
Hannah Millington’s Diary is a different kind of animal. Early in 2007, at the age of 25, Hannah was diagnosed with osteosarcoma in one leg. Her diary is an unsparing account of the treatment process she’s been undergoing ever since. Hannah is rather an irrepressible spirit, kind of an ‘everyperson’ with a lot of spunk, but she pulls no punches when treatment is tough. Her posts are a great antidote to the sterile descriptions of chemotherapy; it’s helpful to know that you might experience hair loss and nausea, for example, but Hannah’s openness gives a much better idea of what these side effects actually mean in one person’s life.
Here’s part of an entry from March 12, 2007:
A much better day and no sickness….hooray!! I didn’t manage to drag myself out of bed until this evening but have felt a LOT brighter today, even managing three proper meals and a few phone calls! I knew it wouldn’t take long until I was up for a gossip! . . . I’m definitely looking more pale and withdrawn and noticed last night when I had a bath that quite a lot of hair came out and it’s starting to feel very fine. To be honest, I couldn’t care less now, I’m prepared for it and as long as it means the chemotherapy is working then sod it!! If Britney Spears can do it, I’m sure I can… bald is IN!!!
The posts aren’t always quite this cheery, and when things get really rough, Hannah’s fiance Gareth (also known as “Gaz”) updates the site. It’s not always a pretty picture — sometimes there are some literally not-pretty pictures (Gaz took some heat for posting a particularly colorful ulcer) — but if I ever face similar circumstances, I’ll feel much better prepared because Hannah chose to share this chapter of her life with a host of people she’ll never meet.
The Disability History Museum is an online museum of documents, images and photographs related to disabilities and disability history. The collection isn’t huge at the moment, but there’s still plenty to explore. Pages can be viewed with graphics, or as text-only; images all have descriptive tags. Content can be accessed through searches, but there is also a nice ‘browse’ feature that also lets you go through the artifacts by clicking on categories.
According to the About Us page,
[T]he Disability History Museum’s mission is to promote understanding about the historical experience of people with disabilities by recovering, chronicling, and interpreting their stories. Our goal is to help foster a deeper understanding of disability and to dispel lingering myths, assumptions, and stereotypes by examining these cultural legacies.
At the moment the site is still incomplete, with the “Museum” section (which will feature online “exhibits”) and the “Education” section (resources for teachers) still under construction. The “Library” is online, though, with a fascinating collection of artifacts available. Here’s a sampling of what you’ll find:
This image of two sisters, taken about 1880, is filed, in part, under the keywords “cognitive disability”. The affection between the young women is obvious, and their importance within their family is, too. Though their clothing is simple and somewhat worn, the family paid for this enduring portrait. As evident here, the museum’s images suggest a rich social history that’s not readily available elsewhere.
Decades ago, it was not uncommon to be accosted in public places in urban USA cities by beggars claiming to have particular disabilities. (Sometimes the disabilities were real.) Cards were handed out in public places, in the hope that those who received them would give a donation in return. This “charity postcard” from 1910, requesting similar donations, suggests that the use of the written word to make an immediate personal appeal may have paralleled the rise of persuasive advertising. This card implicitly invokes another social issue; nearly 100 years later, earning a living is still problematic for many people with disabilities.
Among the documents in the museum’s archives is a fascinating one reporting on the trial of one Dr. Heiselden (Jury Clears, Yet Condemns Dr. Heiselden). This Chicago Daily Tribune article, published in 1915, outlines one jury’s response to the ethical dilemma faced by Dr. H. when he was asked to treat — or not — a newborn he considered to be non-viable. The doctor’s dilemma was by no means unique; the detailed coverage, and the openness of the discussion, is not so common today — at least in newspapers. There were, perhaps, fewer personal injury lawyers around in 1915.
If these plans (right) are any indication, architects have been designing accessible bathrooms nearly as long as bathrooms have existed. Nowadays, we’d hope for a roll-in shower instead of that bathtub, but otherwise, these plans, published in The Polio Chronicle in 1931, would serve pretty well today.
Another document details plans for putting “the handicapped” to work to alleviate the labor shortages of World War II. The Physically Handicapped on the Industrial Home Front, published in Crippled Child Magazine (June 1942) details plans for testing and training people who had been marginalized when employment was scarce or when employers had an ample pool of ‘able-bodied’ workers to draw from.
Living independently is the subject of the 1970 article Bachelor Girls, written by a young woman whose brush with polio left her unable to care for herself. The article’s tone is straightforward, cheerful and practical, and addresses essentially the same issues people who must live with attendants face today. Though the article was published a scant 40 years ago, some of the suggestions are surprisingly different from solutions available today. One thing has certainly not changed; options, then as now, were expensive. The magazine in this case was the Rehabilitation Gazette — whose title alone indicates a shift in consciousness, at least where vocabulary is concerned.
Much of the language used in the collection is jarring to the modern eye or ear. The museum has a sensible note regarding language in historical use on its Library Orientation page.
Photo of the Brace Maker (1932) (uppermost, left) also from the Disability History Museum
If you read GearAbility regularly, you know that it’s an article of faith around here that adaptive equipment doesn’t always have to be specifically designed for the medical consumer. Today’s case in point is Stokke’s Tripp Trapp chair, a sleek, modern chair designed to fit people from babyhood up through teens. (And beyond, if you’re a small adult.)
The Tripp Trapp it is a beautiful, well-designed piece of furniture with a reputation for durability. Both the footplate and the seat adjust up and down the legs to allow a custom fit for whichever child is using it, making it a good choice for many positioning requirements. It’s meant to fit under regular dining tables and counters as a kid-friendly dining chair in almost any house.
The Tripp Trapp isn’t cheap at about $200 [USD] (plus another $40 [USD] or so for the baby rail, if you need it). On the other hand, if eBay’s any indication, resale value is high; if yours is well-cared-for, you might be able to recoup much of the expense when it’s no longer needed.
An equivalent adaptive model is made by Special Tomato. The “Height Right” chair isn’t as attractive as the Tripp Trapp, and the framing looks a bit jerry-rigged to me. I think I’d be more likely to trust the time-tested Stokke design. Special Tomato does offer a wooden tray, though, which could be useful for extra support in some circumstances.
The Height Right sells for around $170 [USD], the tray for a whopping $83 [USD]. Stokke doesn’t offer a tray; if that’s what’s needed for optimal support, then the Special Tomato is the way to go.
You’ll be able to buy the Stokke at upscale children’s stores; the Special Tomato will almost certainly require ordering from a supply house like Sammons Preston; shipping fees are likely to increase the cost substantially.
Gimp on the Go, billed as “The Internet’s Premier Disabilities Travel Publication”, is a work of love created by a fellow named Adam Lloyd, who became quadriplegic as the result of an accident 24 years ago. He’s more than qualified to run a website for travelers with disabilities; his bio notes that “[S]ome of his favorite destinations are Costa Rica, Germany, Las Vegas, New York, and the Caribbean”.
Just about anyone with a disability will find something of value on this website. It’s not the easiest site to use, and the lack of a search box means that you’re pretty much out of luck if you’re looking for something specific. Don’t let that stop you from delving through the material, though — what’s written here is worth reading.
The website is divided into six sections. Click on Travel Reviews for continent-specific information and several reviews of cruises; the articles are lengthy and packed with useful details.
Travel Tips covers general travel information: Check out Wheelchair Beach Access for a novel — and surprisingly simple — solution to the problem of water access. Other articles cover tips for visually-impaired travelers; travelling with service animals and or oxygen; van rentals, taking wheelchairs on planes and more.
The Travel Resources section features extensive links and “Gimp” reviews, and the Photo Gallery offers a lot of visual proof that there are plenty of good reasons to leave home.
Travel Industry News is a little thin and, as on the rest of the site, the entries are undated; adding dates would be a good improvement and a fine way to let people know when a little more research might be advisable.
You won’t miss a lot if you skip the Bulletin Boards; the contributions are unmoderated, and therefore — predicatbly — full of spam and porn.
On his home page, Lloyd warns that “Gimp” is “updated as time and material allow”; he’s working on a PhD in English and is a little busy at the moment. If you have travel experiences to share, though, send them along — contributing writers are welcome to submit articles. No pay, but contributors “will get credit, prestige, a free luggage tag, and the satisfaction of knowing you’re helping the community of disabled travelers” — not too shabby.
Smithsonian Magazine’s February 2007 issue has a fascinating article called Faces of War which discusses methods of dealing with the devastating facial disfigurements suffered by soldiers who fought in World War I, and the medical personnel and artists who first pursued ‘modern’ facial prosthetic techniques.
Researchers at MIT have developed a robotic ankle-foot prosthesis that allows wearers to walk with a more natural gait. Using springs to mimic the actions of human tendons, the prosthesis represents a major advance in ankle prosthesis technology. Here’s how it works, according to the press release:
The energy produced from the forward motion of the person wearing the prosthesis is stored in the power-assisted spring, and then released as the foot pushes off. Additional mechanical energy is also added to help momentum.
The prosthesis, called PowerFoot One, contains a small, computer-assisted motor which lets the person using it expend 30% less energy than required by conventional prostheses. It’s also lighter in weight and more flexible than current models. MIT expects it to be marked publicly in 2008.
Thanks to medGadget
Read more at MIT News
Several stories illustrating the empathetic nature of cats have been making the media rounds this past week. The story of Oscar, written up in the venerable New England Journal of Medicine and reported by medGadget is one of the most compelling. Oscar, a two-year-old, lives in a nursing home and makes it his business to comfort residents during their last hours of life.