The Right to be Disabled

The piece was taken from The Agenda show aired on TVO on March 9, 2007. The tremendously negative impact of the common reduction of the concept of disability to a mere deficiency is presented. Most notably, an overwhelming consensus on the social benefits of embracing disability as a naturally occurring human difference may be identified throughout the debate.

Who 'you callin' Disabled?

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!

Approaches to working with disabled people

	to take advantage of Disabled people	to work for Disabled people	to work on behalf of Disabled people	to work with Disabled people	to work one step behind Disabled people
Disabled people...	are a market.	are ill.	suffer illness and/or disorders.	are oppressed.	are good people. Their bodies work differently.
The problem is a result of...	Disabled people not participating in the global market.	fate.	illness.	stigma, unjust social, political and economic structures that disempower people with differences.	living in a situation of difference.
The feeling of the helper is one of...	delight.	superiority. They are less fortunate, less capable, less intelligent.	sympathy.	solidarity.	empathy and friendship, and being in a position to learn a lot.
The way to give help is to...	sell products.	raise and give money.	rehabilitate and cure.	tackle the causes of stigma and injustice.	respect their way of life and to learn from them.
The practical action of the helper is to...	set up a local company to market products.	provide funding. To diagnose and to cure.	teach people how to prevent and treat disorders.	campaign together. To share available resources so that, together, we achieve something better.	share the available material and human resources to help them do what they want to do.
Helpers look at people in need from...	behind the sales desk.	above.	in front.	their side, we stand together.	a little behind them, waiting for them to take the initiative.
As a result of what we do, we expect...	to obtain revenues.	gratitude.	gratitude, an enthusiastic response.	to give and receive mutual support.	nothing.
Our relationship is...	business.	benevolent.	teacher / pupil.	partner.	friend, learner, enabler.
Example from the world of disability:	Companies sell overpriced rehabilitation devices and assistive technologies. They protect their interests with patents.	We provide doctors, medicines and rehabilitation hospitals. We prescribe devices. We meet their basic health needs.	We teach people how to be good therapists and caregivers. We teach them how to use their devices effectively.	Together we challenge the concept of normal, we campaign against restrictive patents on assistive devices.	We work together to learn more about contextual barriers and to develop appropriate technology.

Adapted from Approaches to working with people in need, Anamed.

Quirks & Quarks on Autism

Segment on Autism

Embedded audio clip

This segment was taken from the Quirks & Quarks program aired on CBC radio on Oct. 7, 2006. An interesting thesis on alternative definitions of Autism in particular, and Disability in general, is presented. The picture on the left is a cheap hack from the Apparelyzed website. They have really cool designs, so buy a t-shirt and show your support!

Additional links:

• In my language
• Getting the truth out
• Autistics.org