How Mad Are You? November 24, 2008
Posted by eingang in Interesting, Thinking.Tags: anorexia, bipolar disorder, disabilities, mental health, planetou, week11
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BBC recently aired a two-part Horizon series on the thin line between normalcy and madness entitled “How Mad Are You”. The premise was interesting: they took ten people, five of whom had been previously diagnosed with a mental health difficulty, and five normal people and put them in a castle together for a week. Two psychiatrists and a psychiatric nurse were told that five out of the ten had suffered from depression, obsessive compulsive disorder, anorexia nervosa, bipolar disorder, or social anxiety disorder. The psychiatric specialists’ job was simple: on the basis of observation, identify the five. There were some twists, of course, and the entire group of ten was subjected to some different kinds of tests designed to potentially reveal clues for the different disorders, but that is the basics of it in a nutshell.,/p>
I commented on Twitter that I was watching this and Alan Cann responded saying, “Yup, and Horizon made that point well. I do have some reservations re. diagnosis and remission, but hang on, it’s Seesmic time.” With that, he disappeared off and made the following Seesmic video (unfortunately, I don’t have a transcript of this).
After a little bit of thinking time, I formulated a response. You can either watch the Seesmic video or read my response:
The most important thing to take away is that people who have had a history of mental health problems or even who are currently experiencing a problem can appear on the surface perfectly normal to you or me. Indeed they can appear “normal” even under close scrutiny by trained professionals. The trained professionals were only able to identify 2 out of 5 disorders correctly: one who currently continued to experience obsessive compulsive disorder and one who had anorexia nervosa in the past.
You commented that normally psychiatrists or other professionals see people because people come to them realizing they have a problem or they’re recommended by others who think they have a problem. Psychiatrists don’t normally diagnose people on the basis of their current behaviour and certainly can’t diagnose them when they’ve been ill in the past. That’s not always true. Some mental health disorders leave people with permanent changes to their psyche and we saw that in the case of Alex, the mother of three who had experienced problems with anorexia nervosa in her teens. Her body image is permanently changed even though she’s “well”. Granted, that’s not going to be always the case, but I think it’s important to keep in mind that serious episodes of mental disorder can mark you in ways for life.
As educators in the United Kingdom, under the provisions of the Disability Discrimination Act, we’re required to be proactive about accessibility issues for those with impairments, which can include mental health difficulties. At the Open University, as an associate lecturer, I am notified when people have disclosed mental health difficulties and the subsequent listing of potential problems, most of which I’ve never actually noticed occurring in my primarily distance education contact with them. This show is a good reminder that just because people seem to be “normal”, they might not be normal and may, in fact, be dealing with significant internal trauma or difficulties. How can we as front-line educators react appropriately or know when to intervene when all seems “normal”? How can we predict when a sensible, helpful e-mail might send someone who hasn’t disclosed any issues into a chasm? Also, once someone’s disclosed that they’ve had depression or OCD, which may not be lifelong diagnoses, unlike dyslexia or bipolar disorder, when do we stop trying to take that into account or should we? Yes, I certainly have questions, but I don’t have the answers.
Like you, I was really impressed with some of the participants and their abilities to “bounce back” or to deal with their difficulties. In particular, I thought Dan was fantastic with his handling of his obsessive compulsive disorder. I could also readily appreciate Yasmin’s elation at “fooling” the panel time and time again, especially when they picked her out initially as being “normal.” I have an impairment myself and the desire to feel “normal” permeates the thread of my life. I know that opportunities to feel “normal” are few, so I’m happy she has been given that confidence-building jolt.
Nice work, BBC. It was another impressive Horizon episode. I’m happy to see my television tax pounds at work in high quality productions such as this.
Since making the video response, I’ve realized I left out some things. The situation of the ten people in the castle was contrived, yes, and some people have questioned what could really be learned from such a situation. What they’re overlooking is the excellent job the program has done of highlighting mental health issues. It tells us that some of the questions I had will never have a good answer simply because people can look like you or me. The show also demonstrates that even after people are “well”, they still struggle with residual issues about their illness and that can continue to impact their lives and their self-worth. It probably wouldn’t hurt for us to keep that in mind or maybe for us all to just remember to be a little kinder in general to one another. The world is harsh enough.
Thanks for the Memories November 17, 2008
Posted by eingang in Teaching, Thinking.Tags: accessibility, ADD, ADHD, attention deficit disorder, attentiondeficitdisorder, disabilities, e-learning, ein, elearning, memory, memory problems, planetou, week6, week8
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H810: Accessible Online Learning: Supporting Disabled Students is in its first presentation at the Open University. While I have a strong background and interest in accessibility issues for the Web, I do not have much expertise in applying this to e-learning particularly. As a result, I have been working through the course materials on a week-by-week basis myself, linking my own knowledge to pedagogy and research and ensuring that I am familiar with what my students are expected to know. Given that the course is rated at 15 hours a week, this has not been a trivial exercise, although some of the hours have been set aside for students to reflect and contribute to blog or forum entries. Those activities I have omitted, but I have worked through all of the resources (and beyond) and tried out many of the practical activities included in the course. When it came time to grade student essays at the end of Week 6, I discovered that all of that reading had a cognitive price to pay in terms of remembering what had come from where and the specifics.
I wrote the following short message back on November 4th in one of my H810 threads discussing possible alternatives for content delivery in the H810 course:
I’m going to write a more detailed blog post about this (when I have some time!), but one thing I noticed especially about this course is that it’s merciless if you have any kind of memory problem. I’m not sure if you’ve seen my previous blog posting about my own memory problems, but I found my memory particularly problematic while commenting on your TMAs. I’d remember that I’d read/seen something somewhere that I wanted to share with you, but I couldn’t remember where exactly. Normally this doesn’t cause me too much trouble because I either helped write the course or the majority of the course is available as downloadable PDFs, that I can then easily search in tools that I have locally. Where you’re being sent off here, there, and everywhere, and the descriptions of where you’ve been going are fairly general, then it’s very difficult to search. Although I knew I relied on electronic records and notes a lot, it didn’t really hit home how much I really do need to rely on that to supplement my tenuous memory.
H810 is one of the Open University’s predominantly “contentless courses.” That is, the majority of the course is actually drawn from third-party resources and the Open University predominantly acts as a kind of editor in choosing out the appropriate resources and providing a framework of activities and commentary in which to situate those resources. I’ve helped write one of these contentless courses myself, but the degree to which it is contentless depends on the subject matter and availability of high-quality, stable, authoritative resources in the area. The stability and authoritative aspects are particularly important. Just because it is on the Web does not automatically guarantee that what the resource says is true. Just because it is on the Web now does not guarantee it will be still on the Web in six months. We have already seen the “BBC Ouch!” student diaries we used as case studies in the course disappear suddenly, a few weeks after we used them.
H810 relies extensively on external resources. In Week 4, where we first met the “BBC Ouch!” student diaries, students are asked to read accounts from the following:
- 4 one-month long web diaries of students with disabilities starting university at “BBC Ouch!“
- 12 student profiles drawn out of forty available ones at the SKILL Student Experiences site.
- 3 video case studies of students from Skills for Access.
- 7 case studies plus any that interest out of twenty-five case studies at DART.
- 30 case studies from LExDIS project, which were unavailable at time of writing and time of use.
- A lengthy (20,000+ words) essay on the history of Worcester College for the Blind from http://www.rnib.org.uk/xpedio/groups/public/documents/visugate/public_exprmedu.hcsp.
- Review a collection of typewriter adaptations from http://www.disabilitymuseum.org/lib/docs/1284.htm.
That makes 26 case studies by my account that were actually available and I know I personally reviewed a great many more. Without having taken notes on all the case studies I reviewed, could I remember which case study, or from where, something had been mentioned? No. You might think that’s only natural, but even in units where there weren’t such a vast number of case studies, the number of web sites visited or pages read in the e-book become very difficult to keep track of when you decide later, “Oh, I remember reading something about this” and then your memory fails you and you cannot remember where.
As I commented in my short forum posting, this previously had not been that big of an issue for me as most courses are delivered electronically and I can just search the materials for what little I do remember. That strategy failed me here, because all of the content is actually external to what the course directly provides. It was quite frustrating trying to recall where I had seen something. At the same time, it was enlightening to realize how much reliance I have placed on search as a scaffold for my own inability to retrieve or commit things to memory. Again, in retrospect, it seems obvious. That is why I keep such detailed research journal notes and maintain a bibliography database with extended information in a very disciplined fashion. I am providing myself with the data I will need later to remember something.
How can I do that on a “contentless course” without making and keeping notes on everything by hand? Keeping notes would likely work, but it is too much work given how many resources are being used in this particular course. One possible solution is that, similar to a list of references, an annotated resource list is provided by the course team. The problem with that is that it would likely summarize the SKILL Student Experiences site as “Profiles of students with various disabilities or impairments in a higher education setting”, which does not help you remember which students or interesting profiles were there.
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Another possibility is the Firefox ScrapBook extension. I originally started using it to keep local copies of some course content pages because the Open University’s VLE has been acting up at inconvenient moments. This very cool Firefox extension allows you to make a complete, painless local copy of an individual web page (or a set of pages), as well as allows you to use customizable highlighting pens on the content, remove some content, or even add annotations as text or links to other material. In addition, you can organize your saved content into folders, like bookmarks, and, most importantly for my purposes, do a full-text search. If I was using Firefox full time instead of its Gecko-powered, Mac-enhanced Camino brother, I might be tempted.
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I think a better solution is for me to use something I’m already using: DevonThink Pro for the Macintosh. I’ve been using DevonThink Pro as a research notebook, miscellaneous journal, and grade notebook. It handles many kinds of media with ease: images, PDFs, RTF, text, etc, allowing you to easily search and classify those documents, whether they’ve been imported completely into its database or just imported by reference. It also can handle bookmarks or web archives. A web archive, just like in ScrapBook, is a complete record of a single web page or even an entire web site. While it is some work to add an entire web site or specific pages to DevonThink, the task is made easier through the use of a bookmarklet I can install in my browser (see picture above). If I want an entire web site, it’s easier to use the built-in download tool in DevonThink itself, which will download anything linked to a given start page. The end result is the same: a local and completely searchable copy. It has the additional bonus that DevonThink’s classification engine will also thoughtfully suggest related content it already knows about (see last picture)
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I have only touched on the capabilities of ScrapBook and DevonThink, but I think they both have strong possibilities for supporting other people with memory committal or retrieval problems, even though that is not their primary function. ScrapBook is available free, whereas DevonThink Pro is a commercial software product sold for $79.95 US. It is available at 25% discount for educational users or non-profits. There is also a “personal” edition available, which has fewer features, but is half the cost.
I now have a job ahead of me going back through the first ten weeks of the course and archive the resources I previously read or reviewed into a new H810 DevonThink notebook.
More information:
- Devon Technologies. 2008. “DevonThink”. Retrieved on November 17, 2008 from http://universalusability.com/index.html.
- ScrapBook Firefox Extension. 2008. Available online from http://amb.vis.ne.jp/mozilla/scrapbook/.
The Language Debate October 12, 2008
Posted by eingang in Thinking.Tags: disabilities, language, models, planetou, week3
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I’ve just been paging through Rose (2005, p.5) where she talks about the “terminology debate”. By that she is referring to whether it is better to say “people with disabilities” or “disabled people.” She comments that there is no complete agreement among disabled people as to appropriate terminology. Some, not wanting to be defined by disability, prefer “person with disabilities.” Others, considering the experience of impairment and disability to be separate in the social model of disability, prefer “disabled person.” She then goes on to discuss impairment versus disability and appropriate contexts for those terms.
While reading it, I suddenly had a thought: we never worry about whether it’s right to say “person with impairment” or “impaired person.” I suspect most of us would never say “impaired person” when speaking about people with disabilities. Thinking further about it, I realized quickly that most of us would never consider saying “impaired person” because that already has a negative, commonly accepted meaning–that of an intoxicated person. Still, it is striking how that particular set of words cannot be transposed and still be synonymous or appropriate.
I, like Rose, am very pragmatic. I use “disabled people” sometimes and “people with disabilities” at other times. Do I have a disability or an impairment? I definitely have an impairment. If we use Rose’s definition that disability is “… the loss or limitation of opportunities to take part in society on an equal level due to social, attitudinal and environment barriers…” then I do not generally consider myself disabled, but life certainly can be difficult in some ways because of my impairment!
Rose, Christine. 2005. “Do You Have a Disability – Yes or No? Or Is There a Better Way of Asking?” pp:91. Learning and Skills Development Agency: United Kingdom. Available from https://www.lsneducation.org.uk/user/order.aspx?code=052243&src=XOWEB
Disclosing Disabilities September 30, 2008
Posted by eingang in Thinking.Tags: disabilities, ein, planetou, public disclosure, week1
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As I was working through Week 1’s readings and activities for H810, one of the questions for Activity 2.2 gave me some pause for thought. I had already given my students some guidelines on appropriate blogging, but this was a much broader question about public and private identities, and the management of those across different spheres. The specific questions asked were:
- What aspects of your identity do you openly reveal to your work colleagues or students?
- What aspects do you reveal in a more selective manner (if at all)?
- Are there any aspects of your identity or information about yourself that you would feel uncomfortable revealing to work colleagues or students?
This is a particularly interesting topic for me, as I have so many roles in education: student, course chair, and associate lecturer. The relationships I have between people are different in the different roles. As a student, I am subject to rules, regulations, and the authority of others over me as I strive to complete my Ph.D. In my role as a course chair, I have an administrator above me who expects things done in a certain way and at a certain time, but I also have staff beneath me responsible for the day-to-day interactions with students, and I have the students who engage with the content I write and the assessment materials I give them. Finally, as an associate lecturer, I am directly responsible for a small group of students, leading through through materials prepared by others and adding my own experience and knowledge to the mixture.
I normally don’t reveal to my students that I have a disability. I suspect it doesn’t make me seem professional and capable, which isn’t the impression I want my students to have. I want to be accessible and a co-creator in their learning process, but I still need to have some authority. I also do not think that, for most of the courses I teach, it is relevant that I have an invisible disability. It does impact them in how long I take to mark their work, how I conduct face-to-face tutorials, and how I organize our online spaces, but the impact has both negative and positive effects–just like anything else in life! In addition, because I primarily interact at a distance, many of the obvious, potentially inappropriate, behaviours are completely mitigated with the extra distance and time that online interaction brings.
I have often not revealed my disability to my employers unless I felt it was relevant to my job performance or I required some kind of accommodation. I have worked on the same set of courses for five years, but it only fairly recently that I had a discussion with my line manager about why it was unreasonable to send me double the agreed upon number of exam projects to mark and expect them back in the stated timeframe. It had happened to me upon multiple occasions and I was late no matter how much I tried to be on time, simply because marking is an extremely difficult cognitive task for me.
As a student, I was quite surprised to discover that my supervisor knew I had a disability, because I had not told him about when I had applied to do a Ph.D. He had found out from one of my referees. While I had fully intended (and in fact I brought it up) to tell him, I thought it was my place to disclose it, not somebody else’s, even if it did affect my chances of successful completion. I never found out which one told him, but I did think that was somewhat a breach of confidentiality. It should be my right to reveal something like that, I thought.
I am reluctant to disclose my disability in any sphere where it might affect people’s opinions of my capabilities and performance. I generally like to fight things on my own terms and to be considered “normal” unless it is unavoidable. For this course, I have broken my traditional silence: I have been blogging and telling students that I have a disability, as I think it contributes to their understanding of the course material. Many of the students are not disabled and therefore lack the personal experience of the world seeming to discriminate against them, whether that is a valid perception or not. In this case, such discussions are more helpful than potentially harmful, a key criterion for disclosure. Understanding and introspection arises from forthright discussion: a good thing. May it not backfire on me.
ADHD, Memory Problems, & E-learning September 23, 2008
Posted by eingang in Learning, Thinking.Tags: ADD, ADHD, attention deficit disorder, disabilities, E-Learn2.0, e-learning, educational technology, elearning, learner-centered, Learning, memory, memory problems, Ph.D., planetou
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I learned something very interesting about myself today in my role as a PhD student: having a significant deficit when it comes to committing items from short-term memory to long-term memory is a major disadvantage. “Well, duh!” I can hear you think, “That’s so obvious.”
It’s only obvious if you know you have a problem and how severe it is. It didn’t really hit home for me until my supervisor told me today that he’d had students with problems before but never one who he’d always have to review what had gone before because I had no recall. When he told me this, I said that ADHD testing at the Maudsley a few years ago had revealed major problems committing things to long-term memory.
At the time of the testing, I hadn’t considered the future implications or the effects this problem has manifested in the past. It was just an interesting piece of data. It wasn’t until the two facts were linked in this conversation with my supervisor did I realize that it explained why studying for exams had been so incredibly difficult and time-consuming in my undergraduate degree. It also explained my fanatical penchant for documenting things in writing or electronically.
The moral of the story is: you can be your own best advocate, but you can’t successfully advocate for structures and accommodations unless you know you have a problem. That’s a major impediment in learner-centered education. As teachers and guides, we can’t help provide an environment that’s accessible and productive for the disabled unless we understand their needs. Understanding their needs might require helping them understand themselves a little better.
My own breakthrough came through a face-to-face social context. However, it could just as easily have been fostered in a social learn context via Twitter, Plurk, instant messaging, or a forum discussion. How can we, as educational technologists, provide technological tools to help e-learners understand themselves better and then foster productive learning, collaboration, and development? I’m pondering those questions today with my own increased self-awareness; I am sure they will influence my teaching and learning in the future.
