Disability and the Public and Private Self

In politics, it doesn't matter who the politician is, it only matters who they appear to be. Presentation is key in politics; if you are a bad person but you can present yourself well you will be successful. If you are good but present yourself badly then you will appear bad and subsequently will fail to win the public vote.

What happens when a disability affects the means by which you present yourself (e.g. stammer or Parkinson’s)? Does it then matter who you are? Do the means of presentation (i.e. through disability) become who you are?

Heidegger distinguishes two different ways we present ourselves. In everyday life we present ourselves to other people; we put on a public face and engage with public life (Heidegger calls this public the “They”). We can get swept along by the They and become enamoured by their views. The opinion of the crowd takes over our views and we become lost in the They; we lose a sense of ourselves.

Therefore, presenting our Public self to other people means becoming lost in public opinion; because we surrender ourselves when we engage with the They, we have no control over what other people think; the They is free to think whatever it likes. We take on as our own the opinion of the They and in this case we are the means of our public image. We become our disability.

We also present ourselves to ourselves. We can appeal to our own judgement and disengage from the They. We call to ourselves by recognising our ability to choose one possibility over another (Heidegger calls this ability our potentiality-for-being); choosing involves nullifying one possibility (e.g. the opinion of the They). We are free to choose, thus forming our own opinion. The means of the public image and the image of disability itself is nullified and becomes insignificant. In choosing, we become ourselves.

Stick Man

It was time to trade in my grey NHS walking stick for something better. So I called on the finest craftsman of walking sticks in the land, Stick Man of Helmsley, to provide me with an upgrade. His shop is also his workshop and has the smell of wood dust and craftsmanship. I spotted a slender walking stick with a moulded handle that fitted oh so comfortably in my left hand when I tried it. This was no walking stick; this was a gentleman’s cane. Having always hankered after being called “sir”, I purchased said cane for the reasonable sum of twenty six English pounds.

Now, when I use my cane I feel like I have to dress up to its standard; tuxedo, top hat, monocle, polished shoes. I feel like Fred Astaire, although I’m not sure I could keep up with Ginger Rodgers!

Metal detecting

Do the means by which I look for something change the thing I’m looking for? If I use an expensive metal detector, does that make the metal in the ground more valuable? Of course, once I find something the status of that thing changes from not found to found. But, that change is in relation to my point of view: it is a change for me. Only when I find it can I have knowledge of the object; it is impossible to know the object before finding it. An act of finding and knowing is prior to knowledge. Therefore, it is not possible to verify whether using an expensive or inexpensive metal detector changes the object.

However, the means of the search does change the act of searching itself. Using a good metal detector makes it more efficient while denying there is anything to find or using a broken detector makes the search difficult.

Reacting to Parkinson’s (or stammering or depression) is like going metal detecting; you have no control over what you find but you have a choice of how painful or difficult the search will be. Even if you refuse to go the disease will drag you on the search anyway. Therefore, using a good detector makes it less painful and enables you to see more of the disease, which in turn allows you to see more of the space within the disease for you.

Why am I surprised?

I’ve just had an almighty stammering block while talking on the phone. Predictably, the old feelings of shame, frustration and self-hatred rose in my mind. But I suddenly overheard another reaction; I was surprised I had a block! I’ve been stammering all my life so why was I surprised?! Its like being surprised I can see when I have eyes. Stammering is part of me; of course I don’t want a stammer but stammering is something I do. It is part of me (but not the whole of me).

I think I was surprised because I have tried for so long to deny my stammer. However, it is impossible to push yourself away. Trying to deny something of your self causes pain. I stammer because I am a stammerer. It would be strange if I didn’t stammer! This is not to say I am only my stammer, I am a lot of things because my thrownness as a whole is larger than any one part of me.

The same logic applies to my depression and Parkinson’s; I shouldn’t be surprised I manifest the symptoms of these conditions when they are part of my thrownness. For example, I went to get my hair cut today and I noticed in the big mirror the blank expression and tremor of Parkinson’s. Again, it shocked me. But of course I show those things, I’ve got Parkinson’s! It is part of me.

Accepting my disabilities is learning not to be surprised by them.

What is stammering?

According to Heidegger an essential characteristic of human beings is the need we have to communicate and share with others our state of mind and understanding in an intelligible way. It is one way we define our place in the world and who we are. A truthful expression of who we are can be defined as authentic; the self is being articulated. In contrast, merely repeating what we’ve heard without any thoughtful contemplation is inauthentic; the self is laid to one side.

Putting our experience into words is equivalent to the construction of “themes”, which are related, but not identical, to the experience; for example, the word “sun” does not carry the Sun with it but does trigger an average notion (or theme) of the “sun” in the mind of the listener. Themes can either be authentic or inauthentic.

Stammering disrupts the means by which the need to communicate is fulfilled. It renders the construction of themes confused and inauthentic; therefore, constantly and painfully shifting a sense of self and belonging.

Stammering is thematically inappropriate communication. When I want to talk, I think about the theme I want to convey. This phase of thinking is free of stammering and feels authentic, I am gathering together my thoughts and building my theme. When I’m ready to physically verbalise my authentic theme it feels like my stammer imposes its own, inauthentic theme, pushing my intentions out of the way and fulfilling its own agenda. There is an intermingling and fight for control between my personal, authentic theme and the inauthentic, stammering theme: as if two songs are being played at the same time. It is very confusing and disorientating. I’m not sure if authenticity wins the fight…

Progress

We have a choice to fly anywhere in our emotional landscape. All we need is a means of getting there. At the time of my diagnosis I came across an emotionally broken down plane that had been grounded at the first sign of my Parkinson’s symptoms in 2005. Since then the plane had been left in an increasing state of disrepair. It looked like it would never fly again.

I had learnt over many years to repair, as best I could, other emotional planes in my fleet damaged by stammering and depression so I had some of the parts ready to repair the plane I found. With the guidance of my therapist Angela, I set to work. First, I noticed how the diagnosis had closed me down, as if my future had become uncontrollable. I was also bracing myself for the sudden impact of Parkinson’s but I realised it gradually seeps into you. I needed a long term strategy; stammering and depression had closed me down in my past so I tentatively knew what to do this time. I carefully began to unfold myself. The idea of thrownness removed the impediment of blame (my susceptibility to Parkinson’s is part of the state in which I was thrown into the world and this configuration was beyond conscious control), making the resulting openness wider. I then filled this openness with the space to choose. I chose to accept Parkinson’s for what it is: a part of my thrownness and not the whole of me. I chose to see the space within my disease that remained for me.

This further allowed me the freedom to see the positive influence my stammer and depression have had on my life; they taught me how to cope with the challenge of Parkinson’s. This told me I am able to ground myself anywhere I like (even in the positive ground of stammering and depression) and it is not necessary to plant myself in negative ground.

This is the positive progression of my Parkinson’s. I am making good progress repairing that plane; it will soon be ready to fly…

Bringing us back to ourselves

Heidegger believed we are truly ourselves when we are "authentic"; when we inhabit all aspects of our thrownness and our ability to choose. However, we are constantly pushed into being inauthentic by falling in with the crowd (Heidegger describes society and the influence of other people as the "They"). Our individuality gets curtailed when we are immersed in the They. How do we recover our authenticity and bring us back to ourselves? We need something to hold onto that can only be our own, thus preventing us falling into the They. Heidegger chose our being-towards-death; our death, when it comes, will be ours alone. No one can die another person's death. Therefore, thinking about what we lose in our death reflects back to us what makes us individuals during life.

We can also get lost in the crowd of our Parkinson's symptoms, until we lose sight of ourselves. However, it follows from Heidegger's argument that ironically it is our unique experience of these symptoms (no one can live them for us) that brings us back to all aspects of our thrownness and who we are. We can be authentically ourselves even within Parkinson's.

Towards emotional clarity (while eating cake!)

There are things you can’t control and there are some things you can. The art of coming to terms with Parkinson’s is to choose the ones within your grasp and leaving those beyond your reach. Image a two-layer chocolate cake but only one layer is edible. If you cut a piece of cake and eat both layers at once you will confuse what is and is not controllable and end up spitting out both; you control nothing by trying to control everything. You must carefully separate the layers.

When I was diagnosed with Parkinson’s, an arctic wind blew in and frosted up the windows from which I view the world. I have made some progress in defrosting those windows by recognising which layer of chocolate cake to eat; I can’t eat the Parkinson’s layer (my symptoms will decline of their own accord) but I am nourished by the ability to choose my reaction to Parkinson’s. This is the basic ingredient that makes the cake edible. I’ve also added other ingredients to add flavour to the cake: an openness and willingness to challenge entrenched negative perceptions; recognising the possibility of choosing an alternative thought, emotion or behaviour and not being led by the nose by the negative; making that helpful choice. This is empowerment in the face of infectious disempowerment and the road towards emotional clarity.

Personal identity and Parkinson's

When faced with a diagnosis of a chronic, incurable disease such as Parkinson’s it is tempting to think you have lost your identity and become a disease. Is this valid? Do I become a different person as my symptoms get worse?

Since the onset of Parkinson’s I have become qualitatively different to the symptom-free person I was in the past (indeed, we are all different compared to the people we were in the past). However, I still describe that past person as me because of the numerical sameness he shares with me; there has only been one of me in the past and now in the present. In other words, my personal identity has remained non-branched and continuous despite, for example, growing into an adult.

My numerical sameness can be described as either “spatiotemporally continuous” or “psychologically continuous”. Spatiotemporal continuity means during my life I have carried out a single, continuous series of actions in space and time that can be traced back to my conception. Psychological continuity states I have the same identity as my past self because I share memories and character traits etc with him.

This raises a question: how much continuity is needed to maintain my identity? Spatiotemporally I can lose significant parts of my body and still be myself but if all the atoms that make up my body were separated I would cease to be me. Psychologically, I can gain new memories and experience new mental states (e.g. depression) but I can still identify with my past self and maintain my identity. There is significant flexibility within personal identity to remain who you are. 

Therefore, Parkinson’s may restrict my body and affect my emotions but it won’t be sufficient to change who I am.

This essay was inspired by “Riddles of Existence” by Earl Conee and Theodore Sider.

Student Counselling Service at Oxford

Depression can be an incessant voice pointing out your flaws and saying you are no good. It tries to isolate you in these thoughts and drain colour from your thinking until you see the world only in depression’s dull grey terms. This internal sea sickness can be very difficult in externally calm seas but even more so when pressure makes the external sea rough.

My seas became rough and my depression storm intensified during the first year of my DPhil. It takes courage to admit difficulty but I’m glad I sought help. Oxford University responded well and offered me a chance to go to their Student Counselling Service. I felt less alone in my difficulties by the fact Oxford would fund their own Counselling Service. Depression and other difficulties must be quite common amongst the students (and staff) at Oxford, as in the general population. It is nice Oxford recognise this and provide the resources, despite any difficulties, for you to be successful. There is no shame in seeking help!

I was apprehensive before my first session but the therapist I met there, Ruth, was reassuring and compassionate; she obviously cared and wanted to help. I learnt that counselling is a neutral place where you assess your automatic negative thoughts and patterns of behaviour; it is an act of overhearing yourself that enables more helpful thoughts to replace the depressive ones. Ruth introduced me to mindfulness and the philosophy of Heidegger. Together we built a solid foundation of understanding that has lasted to this day. Indeed, I have started to build upon these foundations with my equally brilliant, current therapist Angela.

I am very grateful to Ruth, the Counselling Service and Oxford for helping me to take the first steps to understand my depression and to finish my DPhil. I now sail, both internally and externally, in calmer seas.

An extra leg to stand on

With the onset of my Parkinson’s symptoms, I’ve come to realise how hard the body works to maintain its posture and how important this is for movement. Take your legs for example; the bones in your legs are wrapped in layers of specifically sculpted muscle and it is the careful balance of these muscles (some relaxing and some contracting) that keep the hip joints active and the leg straight with knees pointing forward to enable the legs to move freely.

Unfortunately for me the coordination of these muscles is dependent, in part, on the correct levels of dopamine; the chemical reduced in Parkinson’s. As a result, the muscles of my right leg are becoming uncoordinated with some rigidly locked in place while others are still active, causing my whole leg and foot to rotate to the right. Ultimately this causes me to drag my right leg and swivel my hips to push the stride through, resulting in an unsteady, shuffling walk.

There is help at hand! I’ve been given an extra leg! In fact it is a beaten up, NHS, metal with grey plastic trim walking stick. Despite its lack of aesthetic appeal, my walking stick is doing a solid job of providing stability to my walking and reminding me to extend my stride. These adaptations I’m making are about gaining extra capacity. It is unhelpful to see them as what I have lost; they are something to gain.

Approaching Parkinson's

Not only do sufferers have to approach Parkinson’s but non-sufferers (e.g. family, friends and strangers) also have to engage with Parkinson’s through the sufferer. Therefore, Parkinson’s sufferers can mediate the reaction non-sufferers have to Parkinson's.

An open and honest curiosity allows the sufferer to explore their disease and enables them to continue a helpful reaction to it; mentally closing yourself down in the face of Parkinson’s mirrors the restriction in your body but this denies the greater flexibility of your mind. Closing down treats Parkinson’s as the mythical creature Medusa, who turned anyone bold enough to look directly at her to stone. You were safe if you looked at a reflection of Medusa. This is the flaw in the myth; whether we look directly or indirectly at Medusa we experience the same thing, namely light reflected from her. If one way of looking is safe then the other is too. It is fear alone of directly approaching Medusa that turns us to stone. Mentally, fear of Parkinson’s, and not necessarily Parkinson’s itself, also turns us to stone.

Adopting an open attitude to Parkinson’s encourages openness and choice in non-sufferers too. It leaves the door open for the exploration of Parkinson’s that the non-sufferer may choose to take. If the sufferer closes the door it takes away that choice and makes the Parkinson’s journey a lonely one for both sufferer and non-sufferer.

A present absence

When I approach or talk to someone I sometimes feel I have to reach over my stammer, depression and Parkinson’s to engage with them; as if I hold in front of me a life size cardboard cut out of me but featuring only my disabilities. This feeling of detachment and disengagement can intensify as I hit a particularly bad stammering block, waves of depressive negativity wash over me or the physical symptoms of Parkinson’s become markedly overt. It then feels like my body with its disabilities is encountering the person but my mind and my sense of ownership is shoved into the corner and held there. I am present and absent at the same time.

Is a new start possible while Parkinson's is still there?

In an attempt to recognise my situation and adapt to my disability I have moved into a bungalow; for example, I don't have to climb stairs, therefore saving energy for other things. It feels like a new start and a new opportunity. But, can there ever be a new start when I have to engage with old Parkinson’s? It’s as if I am dragging a tractor tyre around with me wherever I go and I can’t cut the rope.

However, it is important to remember that a new start is built on the past; when you start again you also "drag" your good qualities with you, the lessons you’ve learnt and the strategies to cope. Such things are always with you, helping to lift the tyre off the ground and lessening the burden of Parkinson's as you face new challenges.

A new start is never totally new, but that can be a good thing.

Emotions are blunt instruments

A negative response to Parkinson’s disease or a stammer may be appropriate in a given situation. However, the problem with negative emotions is you tend to get stuck in the negative until it is all you see; indeed, you may even begin to crave the emotion. Also, emotions are not subtle interpreters of a situation; they are blunt instruments when finer tools may be able to build a more complete picture of a situation. In addition, emotions are not permanent; they pass in and out of consciousness. Therefore, just because you feel an emotion, doesn’t make it true.

Thoughts and feelings form a reciprocal relationship; emotions generate thoughts and thoughts trigger emotions. Therefore, thinking negatively generates a spiral into negative emotion and more negative thoughts.

It follows that negative emotion can be reinforced by negative thought or changed by positive thought. For example, thinking, “I can’t do that because of my Parkinson’s (or my stammer)” generates a negative emotion, which supports the negative thought. On the other hand, thinking, “I will give it a go” creates a positive feeling. This reforming of emotion by thought gives us the opportunity to steer ourselves through rough, negative seas until we reach calmer waters.

Issues of control in disability

A meeting has been called and the heads of each department dutifully sit around the big meeting table. Among those attending are infrastructure (including emotion, intelligence and movement), finance (fuel and energy consumption), advertising (talking and his rival stammering) and motivation (happiness and depression are both there). A new person strides into the room after the others arrive and takes a seat at the table. Everybody looks at the newcomer, “whose he?” they whisper…

The chairman calls the meeting to order and bluntly asks,

“Who is in control?”

“This has become an all too important question to the running of this company. It has recently come to my attention that this company is rife with conflict and tension. I realised this following the latest appointment to the board, due to internal promotion; let me introduce our newest member, Parkinson’s disease. Parkinson’s is cut from the same cloth as stammering and depression, who have dominated the day-to-day running and philosophy of our company. I can anticipate further power struggles...”

The chairman pauses, takes a sip of water and then continues, “I now realise that a lot of you around this table feel a lack of control, a disempowerment and disengagement. You sense three individuals, stammering, depression and now Parkinson’s have collectively taken control and you have been marginalised. You think this means that the company doesn’t have a voice or a place in the world or is judged badly or can’t be itself. But this is not the case! When the company was formed everyone around this table was thrown together and told to collectively forge a life; in this endeavour no one department is more important than another. Certain members of the company have dominated because our perception has been seduced and made docile. We have failed to see how hollow and unpersuasive they can become. We have the chance to live alongside and with each member of this board and still keep this company moving forward. Knowing that we are free to change our perception is crucial…”

What does a stammer feel like?

Imagine you are the head of a company called “My Consciousness Inc” and you want to send an important message to another company called “A Listener,” which is located on the other side of town. The message is so important that you arrange for a courier to hand-deliver it; you are both the instigator of the content and the means of its delivery when you speak.

So you give the message to the courier who then sets out in his car to find the headquarters of “A Listener”. Sometimes the burden of the message or the burden of the journey is seen to be too much and the courier refuses to go; the message is never sent out as you avoid speaking. On other occasions the courier reluctantly agrees to go and sets out in his car. However, the journey is not simple; the roads are confusing and full of memories, fears, shame, anger and frustration, all in their own cars causing traffic jams and accidents. Indeed, they deliberately block the courier or run him off the road so the message arrives late or the block is so bad the courier turns back.

You perceive that the company’s reputation is at stake unless the message gets through to “A Listener” so you obsessively monitor the progress of the courier. You wince at every traffic jam and berate the courier for failing to arrive on time or not at all. But you are also the courier so you end up beating yourself up, which only increases the volume of other traffic on the road.

Once the courier agrees to go, he usually finds “My Listener” and hands the message over; but as the head of “My Consciousness Inc,” you only see the time spent in traffic jams and exaggerate the influence of the other cars on the road. You wring your hands over how inefficiently the message is conveyed and not whether it was delivered; the means and the details of the journey become more important than arriving at “A Listener” headquarters.

As the boss of “My Consciousness Inc,” you blame yourself for not being able to choose a different courier but you are wrong to do so; blaming the courier, who is part of the company anyway, is blaming yourself twice over for something that wasn’t your fault.

Stammering is part of your thrownness and as such is blameless; nobody, including yourself, is responsible; stammering (like the fact you were born with two eyes) just is.  You can’t change the fact of thrownness but you can change how you react to it. Choose to clear the emotional traffic from the road and choose to notice when the courier delivers your message instead of only seeing when he doesn’t.

My first encounter with a mobility scooter

When the possibility of using a mobility scooter was first raised I involuntarily contracted as another sign of my disability flashed before my eyes. I saw it as something in me I had lost because of my Parkinson’s.

I went to a theme park today and knowing my walking has become shuffling, unsteady and exhausting I knew I was putting myself in a situation where a mobility scooter was necessary. I lasted about 10 minutes on my feet before having to stop and rest. I was holding everyone up so I relented and climbed onboard the red machine. I had to give up driving after my diagnosis so this was the first time in nine months I had taken charge of a motor vehicle. With some trepidation I turned the ignition key and the electric motor came to life without a sound; I expected a throaty roar of the engine but alas nothing. I shrugged my shoulders as much as my Parkinson’s will allow and laid my hands on the controls. They consisted of handle bars looped at each end with a moveable lever extending from the centre; I was informed that pushing the lever away from me propelled the machine forward, pulling the lever toward me put it in reverse and letting go applied the brakes. I was ready…

I gently pushed the lever and the mobility scooter lurched forward then settled into a steady pace. I was off!!! The wind streamed passed my face and the surroundings became a blur as I raced ahead, knuckles white as I grasped the handle bars…meanwhile toddlers and old people confidently strode past me and left me in their dust; I was actually doing 2mph! But I was mobile, in control and most importantly sat down resting my legs! I drove around the theme park with growing confidence. I even did a U-turn!

I now realise my fear was misplaced; using a mobility scooter is not about what I’ve lost but what I gain from using it, no matter how fast or slow I go.

Learning from adversity

Being comfortable reinforces what you already know, which can be very beneficial. Feeling uncomfortable creates the opportunity to learn something new.

I’ve had a stammer all my life. A stammer, like Parkinson’s, is a chronic condition; it has to be dealt with every day. Again, like Parkinson’s, there is no cure for a stammer. It has been a long, uncomfortable road but through my stammer I learnt Heidegger’s idea of thrownness (the state in which I exist is blameless, it just is); that I can’t choose my thrownness but I can choose my reaction to it. I also learnt resilience dealing with my stammer. It turns out that all these valuable lessons are applicable to Parkinson’s. A stammer was the perfect dress rehearsal for coping with the challenge of a Parkinson’s diagnosis. Therefore, quite unexpectedly, my stammer had a positive influence on my life and in the forging of who I am. My stammer can be seen as the classroom wherein I learnt the clarity to cope with my Parkinson’s. I’m glad I concentrated in that lesson!

We all face adversity during our lives. Sometimes things happen outside of our control. This can be incredibly disempowering. However, real control and real empowerment comes from how we react to a situation. The adversity of my stammer, because I reacted to it in the right way (I learnt from it), shines a light on the adversity of my Parkinson’s. I am grateful to my stammer because without it my Parkinson’s would be shrouded in darkness.