The dangers of “normal”

Society projects an idea of what is “normal”; we reach for this ideal and in the process become predictable. The meaning of the ideal of “normal” is to ensure we engage with and contribute to that particular society’s survival. As part of this projection, we are assaulted on a daily basis by the empty images of advertising and feel the pressure to conform to the society we find ourselves in. In the process we are compelled to compare ourselves to others. In the case of advertisers, the “normal” life they project is deliberately unobtainable so we buy the product to make up for the perceived inadequacy in our own lives; somehow having the product makes us “normal”. Of course, the life they project is nonsense and the fulfilment of owning the product is short lived as fashion and the definition of “normal” moves on.

This is in direct conflict with the individual, varied and unique lives we lead. Therefore, any comparison with what is “normal” is comparing like with unlike and inevitably results in disappointment with yourself; this implicit inadequacy and disappointment is the nourishment of all religions and companies.

This is a particular problem for those who fall shorter of “normal” and are deemed disabled. For example, Parkinson’s sufferers can be drawn into comparing themselves to other people (and also to their past selves) and feel the loss imposed by the disease.

However, all notions of what is “normal” are relative and partial. We are free to choose our own “normality” and who we compare ourselves to. Of course, taking on this freedom shackles us with responsibility for the choices we make. Many of us follow, without question, society’s “normality” to avoid such a burden.

On Impairment and Disability

1. Impairment

I define “impairment” as the underlying disease process that impacts a person (e.g. in Parkinson’s disease it is loss of nerve cells in the brain). The identification of a particular aberrant function of the body and attempts to eliminate or manage the disease process is the responsibility of the medical profession.

Impairment is part of what Heidegger calls the “thrownness” of the impaired person; in other words, part of the state in which that person exists, as determined by events before her birth (or before she was “thrown into the world”). Agency, defined as self-determination, arises only after we are born. It follows that thrownness, which is set up before birth, is not self-determined: meaning that the impaired person is not responsible for the impairment or indeed any aspect of thrownness. It is true, the person possesses the impairment but she is not the agent responsible for the possession (there is no agent responsible for thrownness, it just is).

Criticism of the medical profession for “pathologising” the impaired person is misplaced for two reasons; firstly, it is a form of self-denial to believe the impairment is not present; second, the pathology describes a small part of thrownness and since the impaired person isn’t responsible for their thrownness the pathologising misses the whole person and just hits upon the impairment.

2. Disability

The concept of “disability” arises from comparing the impaired person to those whom are different to her. An example will demonstrate this: we all have an impairment in that we can only see in the visual part of the light spectrum. But this isn’t called a disability because no one can see the rest of the spectrum; disability is a relative term, it needs others with a comparative ability to have any meaning.

The impairment is important here only as a means of differentiating the impaired person from those around her. But, we were all thrown into the world with varying abilities and impairments and therefore, depending on whom we are compared to, we can all be defined as disabled. Disability is a fragile and muddled concept.

The notion that disability is made by the inaccessibility of the environment is predicated on a false expectation of similarity among all people (i.e. ignoring the presence of the impairment). Environmental disability has nothing to do with the impaired person; it is due to the assumed ability of the “average” person that the urban planners catered for. It is gratifying to see during the past 30 years the definition of “average” has broadened to include varying abilities, resulting in a more open environment. However, there is no environment that can eliminate the presence of the impairment, it can only lessen its impact.

3. Conclusion

“Ability”, “disability”, “average person” are all relative terms and cannot be absolutely defined. In contrast, the “impairment” is either present or absent. Therefore, I see disability as a weaker concept in that it relies on the (usually negative) comparison with other people and misses the impact of the impairment on the impaired person. I believe it is crucial, as far as possible, to empower the affected person with knowledge, tools, adaptations, financial support and psychological help to enable, despite the impairment, a free exercise of their agency. Those of us with greater difficulty in expressing our agency should receive more help. Such social care must be for some purpose, an enabling of agency, and not an end in itself; for example, a person is helped to shower and dress in the morning but left all day to stare at a blank wall; the care has led to nothing and therefore has lesser value.

Transparency

Imagine you are out shopping and you come across two shops next door to each other. One is brightly lit, the front door is open and the windows of the shop are large and allow you to see the entire interior of the shop. In contrast, the other shop has no lights on inside, the windows are small and made of frosted glass and the door is closed. Which shop would you go into?

Being open about my Parkinson’s enables me to engage with it in a more proactive way; I’m not hesitating outside the second shop, I’m browsing inside the first shop understanding and choosing the best options for me.

All people and organisations associated with Parkinson’s (Doctors, Parkinson’s Nurses, Parkinson’s UK, Researchers, Physiotherapists, Occupational therapists, sufferers and their family and friends) should set up their various shops on the Parkinson’s high street to be accessible and transparent; this empowers themselves (more people will visit their shop) and also empowers sufferers to cope, day to day, with their disease.

Invasion

We had been sailing on the oceans for years, looking for land and somewhere to build a new home. The ship was crowded with passengers and crew hoping for a new start. Then it happened; a thin line of green appeared on the horizon, “Land ahoy!” and everyone rushed to see. We sailed closer and the green line resolved into a vast coastline. All on board cheered with joy and relief!

It was decided to send a small group ashore to set up a camp; I was one of these initial settlers. The land was strange, but full of delicious and abundant fruit and after years on board ship we gorged ourselves. Then we made a clearing in the forest and set up camp. On the second day we met the native people of this land; strangely, they ignored us as if we had never arrived.

Over the next few years we vastly expanded the camp, cutting down more of the forest for housing and fuel, and rapidly moved inland. As we claimed the land as our own we displaced the natives from their homes and devoured the natural resources.

We had established a firm foothold and a thriving community before the natives reacted; but, by then, it was too late, our invasion was inevitable.

And, to think, all this came from one ship; the name of that ship…Parkinson’s.

"Ain't it a life?"

My life is a juxtaposition and a contradiction. At one moment I'm accepting of my situation and the next I'm embroiled in frustration. I refuse to inhabit the role of a Parkinson's sufferer and then lose myself in the disease. I never take things for granted but I mourn the passing of the time when I did. My expectations and my future struggle to come to terms with what’s happening to me now; everyday tasks take up more of my capacity, leaving undone love and happiness and acquainting me with fear and onlyness.

My initial blissful ignorance slowly gave way to understanding the Parkinson's role that was thrust upon me at diagnosis. Awareness can be a curse. I’ve tried to climb the learning curve, slipped many times but managed to keep on going. It is an uneven journey, which best reflects the nature of the disease; Parkinson's is constantly changing and I'm always trying to catch up.

In mundane everyday life, there is dignity in the struggle with undignified Parkinson's; bravery in being honest about my disease; courage in taking another step; real achievement in learning to live alongside Parkinson’s disease. But to what purpose? To help others with my example? Maybe struggle has no meaning except learning to struggle in a better way.

Is this a life? It is my life.