The Hotbed of Discrimination, Acceptance and Advocacy

Recently, I’ve seen two wonderful bloggers go “off the air.” This Mom and 29 Marbles have decided to take a reprieve from the consuming blogging universe. I am saddened by their departures, and consider the hotbed of issues being discussed can leave us all feeling dizzy.

Parents are trying to understand and raise their autistic children. When are children are initially diagnosed, our first entry point is to a world of medical professionals trained in describing abnormalities, illness, deviations from the “norm.” Other immediate entry points are the Internet and high-profile organizations raising money for autism research. I would imagine that it takes an extremely strong individual, or an experienced one, one who has been in a family with disability, to shove the apocalyptic voices aside. For most of us, it is a journey of understanding autism and coming to understand our children with autism.

For me, I quickly felt uncomfortable with professionals viewing my only child as a pathology. I guess love did this, and that’s a good thing. Acceptance is the next word that comes to mind, but the journey to acceptance, for me, is still an arduous one – the pull of therapies, professionals versus listening to myself, then, the strong voices of the autistic community often condemning parents as abusers. These are really harsh voices, and I’ll be frank here – I do agree that there are therapies and parents that are harming their children – chelation, viewing autistic children as a set of bad behaviours, pathologies – it does take away the humanity of the autistic person. It is prejudice. Yet, there are parents still searching, trying to help their children function in the world without frustration, and those parents need supporting.

After acceptance comes a search into the history of disability, racism and human rights, the construction of normalcy, and the social construct of autism. These are weighty issues and my background is in fine art and literature, not philosophy, although I have an interest in it. As a parent, and a lover of knowledge, I am trying to go back to some of these roots in order to figure out where my belief systems come from.

I use myself as an example in yesterdays post regarding racism – a quick, seemingly innocuous, tapping of the keyboard that put two words together that are interpreted in a certain way, and I am reminded that semantics and words are indeed important. May we all learn from our mistakes, may those that cast the first stone not make the same mistake, harbour any furtive thoughts, of be self-righteous (“The greatest of all sins is self-righteousness”). I use myself as an example not to state that I am a racist – hardly – but rather, how stereotypes are firmly entrenched in our minds. This is a story about how our minds interpret the world.

On Philosophy.com, Jonathan Miller author of Beyond the Fringe states, “The job of philosophy is not to find out the meaning of life, or our relationship to the larger metaphysical principles of the universe; it is finding our relationship of the mind to the world. How the world is represented in the mind; how do we come to have knowledge; what do we mean by certainty. These are the only things about which you can ask questions. I am interested in problems for which you can foresee a solution; questions to which there is possibly an answer.”

As I consider this, I still have yet to find that light at the end of the tunnel. By slipping up, I have to look back at history to understand where I am coming from, all the walls I have to still tear down as I figure out how to best parent my son, how to dialogue in this hotbed of emotions from parents and autistic people.

In Intellectual Conservative Politics and Philosophy, Wendy McElroy titles her article, “Disability Must Be Defined Before Debated.” It’s a good article about attitudes towards the spectrum of disabilities and I am reminded of the contention between various levels of functioning between autistic people. The story in essence, starts with Janeal Lee, Ms. Wheelchair Wisconsin who outraged others with muscular dystrophy because she could actually stand for ten or fifteen minutes on a good day. Judy Hoit, the treasurer of the organization stated, “you’ve got women who are in their wheelchairs all the time and they get offended if they see someone standing up.” This article is an example of people seeing themselves “as an oppressed minority, turning disability into a cultural and political identity…Thus, the now-deceased Christopher Reeve was severely criticized by some disabled advocates because he actively sought to `cure’ his paralysis rather than accept his disability.”

The article questions “what is disability?” and how we should react to it:

“Because my grandmother had German measles during her pregnancy, my mother was born with a malformed arm that ended in a claw-like appendage where most people have an elbow. At first, I didn’t know my mother was handicapped. She was just my mother: an attractive, smart woman who ultimately supported two young children after being widowed. It was the attitudes of other people [emphasis mine] that made me aware of her disability. Not that people expressed hostility or disgust; they were usually awkward, too helpful or furtive in their glances.”

McElroy summizes: “By my definition, disability is a sliding scale. How people react to `the disabled’ hinges on where that person falls on the scale. An extreme disability often makes people uncomfortable because it connects to their own fears of infirmity.”

Ayn Rand states that the solution to racism is Individualism: “`Rationality is man’s basic virtue, and his three fundamental values are: reason, purpose, self-esteem. Man – every man – is an end to himself, not a means to the ends of others; he must live for his own sake, neither sacrificing himself to others nor sacrificing others to himself; he must work for his rational self-interest, with the achievment of his own happiness as the highest moral purpose of his life.’ In this view, Objectivism rejects any form of altruism – the claim that morality consists in living for others or for society.”

It is here I have a difficulty in seeing myself as an “autism awareness advocate,” and understand the wisdom of 29 Marbles and This Mom for taking reprieve, in Brett’s case “trying to figure out what raising awareness means.” We all want to help -- philanthropy a kind-of business. By helping, do we assist our own conscience, or others need? The whole concept of religion is now at stake here, and I am thinking of Nietzsche’s anti-religious view – seeing altruism as a kind of farce, rooted in monotheistic religion. “As an esoteric moralist, Nietzsche aims at freeing higher human beings from their false consciousness about morality (their false belief that this morality is good for them), not at a transformation of society at large.”

You see, it’s an interesting exercise to determine where belief systems lie, to consider that none of us have any unique thoughts, and how alturism can be interpreted by those we are seeking to help and support.

I still like President Clinton's summation which, for me today, is an easy way out of this labrynth: we are just "people helping people.” I know I am trying to raise my son in a positive environment and accept him for who he is. I understand that I am a product of morals and ethics and build my actions on them, while studying the architecture of ideas. It is all I understand, for now, and the point from which this journey inititated.

LINK:

History of Racism