Magaret Mead, the late great anthropologist, once said;
“Never doubt that a small group of thoughtful,
committed citizens,
can change the world;
Indeed,
This is the only thing,
That ever has.”
I recently read a research article that offered up some interesting food for thought for me as the parent of a child with autism. It got me thinking once again about the numerous ways that parents are subjected to an insidious, though often not spoken about, form of ‘disablism’ – a particular form of discrimination derived exclusively from negative reactions towards those who are differently abled.
It also got me questioning just why it is that parents of children with autism are routinely seen as being somehow immune to the experience of disablism.
In their work ‘Repositioning mothers: mothers, disabled children and disability studies’ Sara Ryan & Katherine Runswick-Cole (2008:201) argue that the continued representation of parents as ‘oppressors’ who perpetuate disablism upon their children, by theorists applying the social model of disability, has effectively placed parents outside of the disability movement.
They suggest this is due to the division between the impaired and the non-impaired that the social model of disability creates (Ryan & Runswick-Cole, 2008:199). Under such a division, parents of disabled children are considered non-impaired and therefore positioned as being a causal factor in the discrimination and disablsim their children with impairments face (Ryan & Runswick-Cole, 2008:199).
Ryan & Runswick- Cole (2008:201) argue that in doing so, the social model of disability underestimates parental understandings of disability in a manner that takes little to no account of the broader ways acts of disablism are both perpetuated upon and experienced by parents of disabled (differently abled) children themselves.
Do you think that you as a parent have experienced discrimination/disablism?
If so what form has it taken?
Kate Cregan (2006), in her work “Mapping The Human Body” sites the example of the non existence of homosexuality until it was labelled and defined by the medical fraternity in the late nineteenth century as a clear and present example of the very capacity of the medical system to both construct label and define it’s meaning.
“Homosexuality became known in a medico-legal way within particular knowledge systems that there after have controlled its meaning” (Cregan, 2006 :46). Deborah Lupton (2003) in her work ‘ Medicine as Culture’ also draws attention to the way in which the medical establishments definitional power is at play in the twenty-first century siting the medical professions latest assertion that genetics may be able to predict illness as evidence that“ the knowledge base of scientific medicine has encroached even further into defining the limits of normality and the proper functioning and deportment of the human body” (Lupton, 2003:1).
According to Lupton (2003) this desire for the control and regulation of the human body is particularly pertinent to pregnant women enmeshed within a health system that seeks “increasing control over women’s bodies” through medicalization and surveillance (Lupton,2003:158).
The regulational and definitional power with which medical institutions control and regulate the female body can be seen clearly in Karen Lanes work on pregnant women. Siting Ulrich Beck’s analysis of risk in the modern world, Lane shows how the very notion of ’risk’ has now, through a medically induced process, become synonymous with the biological acts of both pregnancy and of giving birth, so much so than women who choose not to give birth in a hospital setting are often accused of not caring for or risking the health of their unborn babies ( Lane, date, page).
The irony that for hundreds of years giving birth has been regarded as a ‘natural’ biological act that has now been medicalized beyond the point of individual choice for the women concerned, indicates the immense capacity of medicalised perceptions to invade and persuade social thought and individual behaviour (Lupton,2003: 159). As Norbert Elias noted “this kind of dictum ignores the wide variability of bodily development and leads to the patholigisation of what are essentially natural bodily functions” ( Cregan, 2006: 30).
The control mechanisms set in place within the debate over the safety of homebirths are themselves defined by the medical establishment that provides the very power base with which it seeks to regulate and control the human body and clearly earmarks how in “post modern embodiment, we have internalized the control mechanisms that are set in place by various authorities of delimitation institutionally legitimated epistemologies” (Cregan, 2006: 59).
The fact that pregnant women even feel the need to seek medical permission to engage in a home birth provides proof of just how medically regulated and controlled such biologically natural processes have become and reinforces Foucault’s initial observation that such definitional capacity “results in a more subtle and diffuse power by which we internalize regimes of control and learn to self-regulate our selves through the regulation of the body” ( Cregan, 2006 :41).
This documentary follows the experiences of families and teenagers with Autism and Asperger’s Syndrome as they go about their daily lives.
It takes a very honest and powerful ‘warts and all’ look at the Autism experience and openly incorporates the perspectives of both teenagers with autism and their parents.
Theroux does more than just talk to teenagers and parent’s, he actively follows and engages with them in their schools and their homes. His portrayal covers both the extreme love and dedication that parents of teenagers with Autism experience alongside the very real day to day issues of exhaustion, frustration, fear and concern for their teens as they become young adults and step forward into the world.
In doing so this documentary explores life with Autism from just about every angle tackling many of the issues that are often hidden or under-represented within mainstream media.
It is by far the most balanced and revealing documentary on the Autism experience I’ve seen in a very long time.
I thoroughly recommend it and would love to hear your thoughts on this or any other documentaries, movies or books you would recommend?
She wanted to hear him speak. To say the word“Mum” instead of “nnnnh”. She wanted to be more than just a sound in his mouth. She wanted to be a whole noun. She wanted the nuance and the meaning of it to fill her ears and let her know that he at least knew who she was and that she did indeed mean something to him. She wanted to hear joy and laughter falling from his lips. Not the sounds of anger and frustration that too readily constituted his vocabulary.
She wanted so much for him, of him, from him. But most of all she simply wanted to know him. To feel his emotions and understand his thoughts. She wanted to run her hands through his mind. To untangle all the misplaced knots that held him so bound up inside himself. To reconnect all the disconnected synapses that short circuited his world and left her floundering in a sea of unknown origins and misunderstood currents. She wanted to swim in the tide of her son. To be a part of that which no moon held sway over. For he seemed to her to come in and out of himself on a whim.
She found no rhyme or reason for his demands, fears or peculiar likes. Everything about him to her was a compound mystery. She constantly felt he was a haunted house. The structure, the main body of which, was sound but that something un-named was adrift in the attic. Shaking the foundations of his life. Sending furniture like thoughts flying around his head, following their own kind of bizarre and intricately crafted, maze of other worldly logic.
She used to dream that one day he would simply look up at her and say one complete and glorious sentence. Bang, out of the blue. Just like that. But he never did. Even the act of smelling flowers was a mystery to him. He constantly put the flower under his chin. As if he really believed that his chin was the part of his body that could best enjoy the flowers fragrance rather than his nose.
She bowed her head as she watched him aimlessly pulling up fist fulls of grass, mechanically, one, after, the, other from the ground. She found herself thinking again how truly lovely it would be to be able to walk into the garden of his mind. To hear his thoughts and to really know his fears and joys instead of always having to guess at them and hope that she was reading him right.
‘How much easier life would be if it were just like in the movies,’ she thought, as a tear traced its way down her face. She wished she could somehow plug into his universe. Then he could show her his world from the inside and she, in turn, could show him the world as she saw it. But life wasn’t a TV show and she knew no amount of wishing would make it so. The only actor in this play was her.
She presented to the world a jovial face and a warm smile, while inside, she felt every single dream that she had ever held for her son dying as the beginning of acceptance wound its way around her heart. He was different. He did have autism. She knew this first moment was always going to be hard. She hated herself for feeling as if her son were missing. She hated that there was no reason for his condition. She found herself staring resentfully at other mothers wanting nothing more than the assurances of health and safety that their ‘normal’ children gave them. So many resentments in so little time. Their layers falling like blankets over her.
She was at a loss as to know how to explain, even to herself, why the world that she so dearly wanted to share with her son felt so totally gone. The passing down of her favourite child hood stories and the sharing of the animated version of ‘Kimba the White Lion’ seemed somehow to be more than far away. Such simple things and yet….
She tried to blink back her tears of loss and frustration but they kept flowing. Following the crevices of worry already etched into her skin like the tattoos of belonging. Her mind kept asking, ‘how could life distort itself so?’ She felt like she’d been thrown in to the deep end of life and all she’d been able to do was tread water and try to stay afloat. She didn’t want to float. She didn’t want her son to live a life of floating. She didn’t want him to live a series of rote-learnt achievements, or role-played scenarios. She didn’t want him to only ever know his world through a set of computer- generated pictures velcroed to a carpeted board. That was no way to learn any thing. Let alone a life.
In that small moment of clarity, buried so deeply beneath all of the things that she didn’t want for her son, she found herself to be a mother. A mother who knew that she needed to thrash her arms and kick her legs. A mother who knew that she needed to learn how to swim in the ocean of autism. That simply floating was never going to work. That her son too was afloat and he needed her to teach him how to swim.
Suddenly it didn’t matter that he couldn’t call her ‘mum’. It didn’t matter that he smelt flowers with his chin. It didn’t matter that their life together would be different. All that mattered was teaching him how to swim.
