Sorry for the dearth of posts lately. We've had our hands tied with works and lots and lots of writing for our thesis books. In an effort to refine our books further, we're to define the top ten terms that define our theses, to ensure that what we mean to say in our writing, is precisely what we end up saying. Without further ado, here are the top ten terms of Unbound: Psychophysical Design for Spinal Cord Injury and Disability.
The branch of psychology that deals with the relationships between physical stimuli and resulting sensations and mental states.
This definition is taken from dictionary.com. The products that we interact with have psychic lives. There is an aspect of our interaction with them that transcends their function and begins to live in the place of memory and preference. Our favorite t-shirt, arm chair, bicycle, shoes, etc - things that we would never throw away, no matter how old and ratty and disgusting they've become, because of the history associated with them. They're usually associated with a specific memory or feeling that's tied to our past or our conception of who we want to be. I think that this is a trait that's pretty unique to products, which is one of the reasons that I wanted to become a product designer in the first place - it's hard to imagine having this kind of transcendent experience or relationship with an app or a service.
Spinal Cord Injury/Disability [SCI/D]
A spinal cord injury — damage to any part of the spinal cord or nerves at the end of the spinal canal — often causes permanent changes in strength, sensation and other body functions below the site of the injury.
If you’ve recently experienced a spinal cord injury, it might seem like every aspect of your life will be affected.
This definition is taken from the Mayo Clinic.
Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.
Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.
This definition is taken from the World Health Organization. The WHO's definition of disability doesn't specify whether or not a disability is permanent or temporary; in fact, the WHO argues that most people will experience some form of disability within the course of their lives. Recontextualizing what we think disabilities actually mean is important in ultimately addressing the root causes of the social and environmental barriers that one might face with a disability.
The difference between an impairment, an activity limitation and a participation restriction is one of scale and context. An impairment refers to the physical, biological reality of the disability - i.e. what is causing that disability. In the case of drinking alcohol and driving, the impairment is what prevents a person who is drunk from having enough coordination to drive. It is the actual level of alcohol in the brain that makes someone uncoordinated. The activity limitation is how that lack of coordination prevents someone from operating machinery, whereas the participation restriction refers to the specific laws and mores that prevent that person from driving - the social and legal rules built up around that specific situation which falls into the realm of governance.
This is less of a definition and more of a decision with respect to diction. There are a lot of ways to refer to someone who has a mental, cognitive or physical impairment - "handicapped, handi-capable, disabled, differently-abled, and a person with a disability". For my thesis, I've made the decision to use the word "disabled" because I think that of the terms listed above, it is the least problematic with respect to politics and the lived experience. I understand why person with a disability or differently-abled are appealing terms; the former recognizes that a disability exists separately from the person and that the person in question isn't necessarily defined by their experience with disability. The latter seems to me to tiptoe around the question at hand to a more exaggerated degree than the former - and the question at hand is very succinctly summarized by Lawrence Carter-Long, who is quoted in the article that is linked above:
"Perspective. In 2016, anyone who would dare to assert that race 'doesn't matter' or that they 'see the person not the gender' would instantly, and I think rightfully, be called out as either naive or ignorant. Similarly, to suggest disability is simply a 'difference' and has no impact on a person's life is a very privileged position to take. Most disabled people don't have that luxury. The assertion flies in the face of reality and minimizes the very real discrimination disabled people face."
I also think that using the word disabled has an effective corresponding term to refer to someone who is able-bodied. Using analogous language to refer to both sides of the ability binary helps establish some kind of parity between the two.
Otherwise known as someone who is able-bodied. I prefer this term to able-bodied because it helps to establish "responsibility" or the lack there of. If someone is "abled" that means that their ability has happened to them, it is something that they receive and have otherwise little say over. My status as an abled person is due to factors outside of my control, similar to how a disabled person is disabled due to factors outside of their control.
Complete or partial loss of function especially when involving the motion or sensation in a part of the body.
Loss of the ability to move.
A state of powerlessness or incapacity to act.
Definition taken from Merriam Webster.
Discrimination or prejudice against individuals with disabilities.
Definition from Merriam Webster.
Also known as agency. This is the ability of a person to be self-determining, to take their fate into their own hands and to exercise control over their lives. Because of the traumatic nature of spinal cord injury, a person's sense of agency or personhood can be completely and irrevocably altered in the aftermath of their injury. A lot of the existing treatment paradigms for spinal cord injury and trauma ignore this aspect of the damage, or simply do too little to counter it. The crux of my thesis is that by structuring treatment of SCI/D to be empowering as opposed to restorative, we can help people with SCI/D regain their sense of personhood and agency.
I was actually pretty surprised to go to Merriam Webster and find the following definitions for normal:
Usual or ordinary : not strange
Mentally and physically healthy
Of, relating to, or characterized by average intelligence or development
Free from mental disorder
It's hard to understand what average intelligence or development really means, or what physical health means in a country that has rapidly rising rates of obesity. This definition, seemingly innocuous, is indicative of how damaging a term like "normal" can be. Normal is a loaded term that has a lot of baggage associated with it - and is descriptive of a very narrow and arbitrary view of what normal is. If one doesn't fit into the standard definition of normal, as a disabled person might not, there are far-reaching implications for the social, political and economic prospects for that person. But what is normal really? Why is "normal" privileged above "abnormal"? Why is there a value judgment there that denies those who are and that which is different legitimacy?
Different from what is normal or average : unusual especially in a way that causes problems
Also taken from Merriam Webster. Abnormal is admittedly as loaded a term as normal, perhaps in a way that is much more explicit. There is a definite negative connotation to the word, and its inclusion here is as a counterpoint or foil to "normal". Unless one fits into the standard definition of normal, there is something wrong with that person "especially in a way that causes problems". It's this mindset and point of view that is especially damaging to someone who has sustained a spinal cord injury and is faced with the prospect of living life in a wheelchair. It's this mindset and point of view that negatively impacts, or at the very least exacerbates the felt loss of, a person's agency and personhood after an SCI.