Neurodiversity

Exploring The Social Model: Introduction & Groundwork

The biggest problem I can identify in the conversation about autism today, the issue to which everything seems to boil down to, is the seeming refusal to acknowledge autism as a dis/ability—not a disease, not an injury or an insult, but a dis/ability like any other—and consider it within the wider context of dis/ability theory. Which is to say, rather than viewing autism as a series of deficits in need of reprogramming, also using it as an opportunity to look at how our society works and whether or not it needs to function is such a way, and looking at the ways in which autism is used as an excuse to disenfranchise, abuse, and murder people every day, which is how virtually every other dis/ability is considered.

So when looking at the difficulties experienced by an autistic individual, it is of utmost importance to see these difficulties as the result of an interaction between

• A different neurology, which manifests in communicative, sensory, and cognitive differences which may make processing the demands of a neurotypical society very difficult
• The neurotypical world, which is not configured with autistics in mind and therefore causes difficulty for us, if not outright harm

• Other coexisting conditions, such as intellectual disability, Celiac’s disease, epilepsy, &c., which will further complicate matters, at some points to the threat of our lives

Such an analysis is called the social model. A good deal has been written about it before, but since I and many other autistics have found much of the writing to be difficult to understand or appreciate, I am adding my own ground-up analysis and explanation, relating how I have conceived of this model and how it provides me with a useful framework and lens for considering spectrum (and general dis/ability) issues.

In other words: autism can of course not be considered solely a social construct, as there must be a physical reality from which to base any construct, and it is not the intent of the author to dispute this. However, neither can every impediment to a high quality of life for an autistic be attributed directly to some sort of cognitive deficit—and the fact that differences are referred to as deficits is in fact evidence of social construction at work. Further, it is important when talking about autism to be honest and specific about what we are talking about—not intellectual disability, not gut/immune disorders, etc., and not to conflate them with autism. (Or to even pretend to know what “autism” itself essentially is, a topic on which even the most prominent researchers cannot agree, never mind what “pure” autism looks like and who best represents and owns the label.)

A comprehensive view of autism, then, will include both the medical model (what is autism and how can we enable/habilitate people with autism) as well as the social model, perhaps better described as a model of social justice or dis/ability rights (a focus on making society more accessible to autistic individuals and making sure that they enjoy the same level of equality and self determination as everyone else). This all needs to come from a place of intellectual honesty and personal integrity, qualities sadly lacking on all sides of the conversation.

Last week I introduced several interconnected ideas, an elaboration as to how basic dis/ability theory applies to the the autism spectrum and its issues. This week I begin a much longer series of posts examining in detail the social model of dis/ability and how it can help all autistics right here, right now. I anticipate at least four more weeks of posting in this vein, schedule permitting. No one post can stand on its own or will have all the answers—in fact, neither can the whole planned series, I suspect. This post should be considered the introduction, with further posts going into more detail on the various specifics involved.

To begin, some definitions appear below:

• Dis/ability rights are basic human rights such as accessibility, equality, and self-determination.
• Accessibility is defined as the ability to participate meaningfully and equally in society.
• Equality is defined as political, economic, and social competitiveness and as being considered of equal value.
• Self determination is an individual’s freedom to communicate their wants, needs, etc. and determine the course their life takes.
• Accommodation is defined as ways in which the demands placed upon an individual and the environment they are placed in can be modified/redesigned to ensure access to these fundamental rights.

It is a self-evident fact that current American society is not configured for the enjoyment of autistics: witness the dependence on lengthy verbal conversations and eye contact, the narrow set of acceptable interests, obsessions, and repetitive behaviors and motor mannerisms, the emphasis on independent living coupled with long hours of empty socializing, the sensory-offensive environments abounding, etc. Often it seems designed to deliberately disenfranchise us: witness the continued presence of the Judge Rotenberg Center, the monthly stories of children arrested for being autistic or dying in restraints, the semi-annual murder of a child for the crime of being abnormal. Or go into the special education rooms, and witness the hordes of functionally nonverbal children denied access to or instruction in appropriate alternative/augmentative communication systems. Witness their lack of access to the mainstream curriculum, despite numerous proven and developing strategies for their inclusion. Witness their social exclusion as well. Witness the bullying and harassment raging rampant against autistics: witness the “higher functioning” children driven to suicide and drugs, and their “lower functioning” counterparts self-abuse.

Is this not specific enough?

Very well.

A following series of posts shall address the challenges autistics face in terms of accessibility, equality, and self determination, discuss possible accommodations for each, and finally lay out why these issues are important and why considering autism through these facts and focusing on improved quality of life NOW, leads to a rigorous social justice model of dis/ability and away from a “cure” based ideology. Hopefully this will clear up a good deal of the confusion and misrepresentation associated with “neurodiversity” and the social model, and result in productive, situation-specific, advocacy-focused discussions.

Next week: accessibility.

Julia Bascom on 07/26/10 in featured, Society | 2 Comments | Read More