J-Doc

Check out my TEDx talk done in October 2010 in Montréal, QC! I am always closing my eyes in photographs and this could not be the exception.

Jorge Silva argues that when designing assistive devices biomedical engineers should seek to “scratch where it itches.” By adopting alternative business models such as open source systems, users of assistive devices are revolutionizing design and production processes, creating technologies that fit the needs of a larger population.

I recently found this beautiful explanation of the motives for academic hypocrisy elaborated by Noam Chomsky at a Harvard University seminar on February 6, 2002. With the exception of the topic, Chomsky’s entire analysis fits my experience with academia perfectly.

The focus of my PhD was supposed to be “Rehabilitation Engineering”, but I have always been very skeptical of that term. “Rehabilitation” is usually interpreted in academic contexts as the need to create some kind of novel intervention that “fixes” some deficit in a Disabled person. Maybe they had one arm instead of two, or they used a wheelchair to move around, but for the life of me, I cannot tell what is wrong with that, and this sure got me into a lot of trouble with my supervisors. Don’t get me wrong, they are really nice folks, but there is one huge problem: their “boss” is the research institutions who give out grants (e.g., NSERC, CIHR), NOT the Disabled (as it should be). Of course, this is the wrong thing to say for a mere graduate student like me, and in many ways, they tried to make sure I was aware of it.

By the end, I tried to summarize some of these “warnings” in a preface for my thesis but, of course (I don’t know what I was thinking), they ended up asking me to get rid of that too. For years I complied with their demands just so I could earn the coveted degree, but since I still feel like a fraud, I will publish the preface here in the hopes that I can recover some of my integrity… so please, go ahead, download the two page preface my supervisors didn’t want you to read or just download the entire thesis!

Say you are a very eager professor with a lot of time and money in your hands. Say you work in a random university (uh.. MIT?). Say your fame and fortune has tricked you into thinking you know more about the world than you do in reality. Say you understand computers like no other human being and, “just ‘cuz”, you build your dream machine: a $100 $188 dollar laptop that takes your breath away. Say you get the brilliant idea to make one billion of those babies just so, like you, a billion children around the world can be blessed and enlightened with your magnificent creation. There is just one problem: where do you get the children from? I know! from developing countries! of course! why didn’t I think of that? They just love having overdeveloped countries tell them how they should live their lives so they too can waste their resources!… heck! they’ll take anything we give them!

In over 6 years of disability engineering research, I have witnessed the blatantly unethical and irresponsible manner in which the scientific community has been describing Disabled people. In way too many cases it is obvious that the authors don’t have any idea of what disability is (I sure didn’t either but still managed to write a few ‘scientific’ papers about them). We do one thing very effectively though: describe Disabled people as needy so we can justify our work. I mean, some of us have children, and they sure are expensive! So we will do anything for a research grant, and a couple of publications to go with it, because as Upton Sinclair once said, “It is difficult to get a man to understand something when his salary depends upon his not understanding it”. Here are some examples so you don’t think I am just making it up:

Consider a learner with motor difficulties who chooses to refrain from eating independently using an adapted plate and utensils. This learner’s lack of independence may be a result of the physical effort required to use the AT (e.g., if the motor demands associated with using the utensils are too great, the learner may choose not to use them). Johnston, S. S. & Evans, J. Considering Response Efficiency as a Strategy to Prevent Assistive Technology Abandonment. Journal of Special Education Technology, 20(3):45–50, 2005.

This is just beautiful: How can someone choose lack of independence? Don’t they just mean the utensils suck? How come this turns into lack of independence? I mean, if you return something you just bought because it doesn’t do what you expected, nobody blames you, they blame the designer, as it should be. But these ‘scientists’ manage to turn a design flaw into some kind of user deficit just because they can: Clearly, the learner is disabled, so he/she must be doing something wrong. This is another classical one:

The disabled generally have difficulty in communicating with other people effectively. In order to improve their communication, auxiliary equipment must be designed or developed. Luo, C. & Shih, C. Adaptive Morse-coded single-switch communication system for the disabled. International Journal of Bio-Medical Computing, 41(2):99–106, 1996.

You have to love how oblivious these people are to generalizations. It must be great being them and not have to worry about being completely wrong. I mean, they didn’t even bother to specify which type of disability they were referring to. But who cares? Certainly, the Journal of Bio-Medical Computing doesn’t. And they don’t stop there:

…the disabled cannot maintain a stable knocking speed to follow the restrict rule set by the Morse code (i.e. the duration required for transmitting ‘dash’ (‘-‘) is three times of that required for ‘dot’ (‘.’)). Luo, C. & Shih, C. Adaptive Morse-coded single-switch communication system for the disabled. International Journal of Bio-Medical Computing, 41(2):99–106, 1996.

What kind of statement is that? Morse code must be learned anyway, weather you are disabled or not. It is just ridiculous to believe that no Disabled person can learn Morse. You can’t even say this is the case for a majority of them! But it is the reviewers and publishers, not the authors, who bare the full responsibility for letting these lousy papers be published. Way to go Elsevier!