Journalist Sally Young, Formerly an Osteosarcoma Patient, On UK TV

with-koala.jpgSally Young, a BBC journalist who writes the blog Out on a Limb , is the subject of a BBC ‘Inside Out’ story that will air tomorrow in Great Britain. Like other ‘Inside Out’ stories, I’d expect that this one will be available on the Internet for seven days afterward, for those of us who aren’t in the UK. (Check the ‘Inside Out’ “Yorks-and-Lincs” tag in the sidebar for the link once the show’s aired.) It should also turn up in the archives next year.

Sally was diagnosed with osteosarcoma just before she was to be married. Her initial chemotherapy failed, and her leg was amputated as a result; the BBC has covered her story, and her blog has covered it in detail as well. Although Sally was told she was infertile, this year she and her husband Pete unexpectedly became parents. In addition to life “out on a limb”, Sally’s now writing about life with daughter Holly.

There’s an excellent interview with Sally on the ‘Inside Out’ site; if you, or anyone you know, is facing a similar situation to Sally’s, it’s well worth reading, as is Sally’s blog.


Two Blogs – A Different Kind of ‘Gear’

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.

Image of a High-Tech Prosthetic FootSteve 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.

Image of Han with a ScarfHannah 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

Image of a Man Making Heavy Metal Leg BracesThe 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:

Image of Two Sisters, One With Apparent Disabilities, and her Affectionate Younger SisterThis 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.

Image of a Donation Request Card Showing a Man with a Spinal Injury in a WagonDecades 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.

Image of 1931 Plans for Accessible BathroomsIf 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