Living with a Disability

 By Robert Farley

Although mine is an individual perspective, many of my experiences would be common to others with disabilities.

Because I have always been able to talk and communicate and I don't look all that unusual, my acceptance by other people has been generally positive. Someone with a speech difficulty or facial deformity no doubt would have a different story to tell.

My disability affects me by restricting mobility. It means simply that I do not have a wide range of movement. This makes daily living tasks more difficult. Things like dressing and getting out of bed and household chores, which I try to avoid as much as possible, take me longer to accomplish. I also, at times work out alternate ways of doing things. Everything I do takes a great deal of physical effort, which sometimes has a good side to it. If I am on my own in the house and I'm eating a bag of peanuts, say, and I think I've had enough but I know I won't stop, I'll put them out of reach before going to bed in the  knowledge that it would take too much effort to get up again for a peanut.
My life style options are severely reduced.

Choices of education, career and opportunities to have a social life have been dictated by the consequences of my physical abilities rather than by personal aptitude or preference. I have been, and am now, unable to financially and physically access services which would enhance the quality of my life. I mention financially because had I been disabled to this extent as a result of a traffic accident and received a large compensation pay out then many of the problems I face would be more readily solvable. Because the most critical effect of my disability has been my lack of independent mobility it means I had to rely on other people or mainstream transport to get around. I couldn't use ordinary transport in my chair.

And in the end I could not have people lift or wheel me  around. It was like an assault. I could not accept that being so much baggage for others to move around was any way to live a life. Transport means - like wheelchair modified cabs, community transport, and electric wheelchairs that I could move outside myself - were just not available, so I spent many years in relative community and social isolation. It was not something I deliberately set out to do but I, in effect, made a decision to live on my own terms as much as I could.

I had no sense of giving anything up.

Going out or being taken out by other people was not any kind of pleasure and at home on my own I had an opportunity to indulge and develop my own interests and talents. I found, perhaps surprisingly, I had several residual abilities. Like painting and writing and, most surprising of all considering the level of my physical disability, wood craft. I eventually became so good at making children's toys and furniture that was registered as a craftsman with the Crafts Council. This didn't mean all that much except that I got a lot of invitations to exhibit at Craft Shows and I got to fill in a lot of forms. What it did mean to me was that I was doing work of a high standard. Anyone's standard.
So I had things to occupy me in my isolation. Everything except people.

Gradually I dislocated from the world about me. These shifts were not traumatic or dramatic. They were a natural, inevitable result of my not living in the world in the usual active way. With the exception of a few family members, the only people I met were those who for a few minutes called in to pick up toy orders.

Because I lost the art of being a social person I didn't learn or grow as one does as part of a community. I acquired knowledge from books and my mind was full. Most of my life experience I lived between my ears. The world played out its passing parade before me coloured by my imagination. And I observed as a spectator detached and remote from it all. Slowly, without my noticing, without my missing it or believing there was anything for me to miss, the world, my life and all those years passed me by.

I had, in some respects, ceased to exist. Or felt I no longer existed. For if we develop an image of our selves, our place, in society and feelings of self worth through contact with other people and other people's reaction to us, then I had missed out. If other people are the mirror in which we see ourselves, I saw no reflection of myself.

A few short years ago a couple of things happened.

Wheelchair modified cabs and buses and an electric wheelchair became available to me. At the same time, slow learner that I am, it occurred that my idea of trying to live life without assistance might not have been a good deal after all.

The human spirit is indomitable they say, and with more strength and yes, courage, than I thought I had, I began the difficult and at times painful process of being at large.
There were so many things strange and unfamiliar to me. I felt quite unbalanced by the whole ordeal. While I knew so much about so many things even basic, everyday happenings that are taken for granted by most people were foreign to me. Just moving about at speed in a vehicle was alarming. And to have other cars passing by just centimetres away made me flinch. One thing I found fascinating was the sight of trees on the side of the road moving towards me and appearing to pirouette as they passed by. I still don't have a great sense of space or distance so I am quite dangerous moving in a crowd of people or on the road near cars unless I concentrate on steering my chair.

It was re-establishing an easy contact with people that was the most difficult.

I had lost the art of casual conversation. I felt in some respects I was from another planet and I did not speak this language or know the rules of play. This was all the more surprising because I had always been gregarious and out going. Well, alright, a big mouth if you like. It was quite distressing at times and also amusing. I remember having a polite and formal conversation with an elegantly dressed woman in David Jones store in Newcastle for a few minutes before I realised it was a mannequin. I found the faces of women quite entrancing. Especially in groups at a function where they were made up.

I found myself in the early days staring at these quite beautiful sights with these exotic colours. I was looking at them as if they were paintings. I soon stopped staring. Whilst I quite often felt odd, I didn't want to be thought of as odd.

Then, right at the beginning of my coming out, as it were, there happened an incident that defined for me completely the results of my less than stimulating existence. I had to go to Newcastle for a dental appointment and it was my first time out in a cab. The whole thing was a solo exercise. I felt free being able to move about without being pushed. At the end of my-appointment I sat and waited for the taxi and noticed the ladies selling sweets to raise funds for the hospital. I thought of getting something to take home for my niece and nephew. I was about to move over and purchase something but I froze. I realised I didn't know how to make a purchase. It was an alien concept for me. Then it hit home. I shook with embarrassment and nerves. I was unable to do what any child could do. I felt total humiliation as I understood fully what I had lost. Social skills like any other skill disappears when not used.
It was little things in one's life like shopping or moving about on one's own that were the most difficult to come to terms with.
These are skills or habits that one acquires unconsciously as part of living. But that for me didn't happen or only infrequently. I felt, and still do sometimes, a sense of separateness from others. That my life experience sets me apart. I am sure it is a feeling I share with other people with disabilities. One thing I discovered was that I was considered disabled. It was not something I continually thought of. It is simply a condition, a physical state in which I live. It is a background thing. Like having brown eyes or black hair. Or not liking parsnips. Whilst I do not continually consider it, I do, of course, acknowledge the difficulties and differences it has visited upon me. In much the same way as you would moving in circles where black hair and brown eyes were not usual. Or a place where the only thing on the menu were parsnips. My disability is a fact but generally a fact not confronting.
My disability does not determine what. I feel, what I like, what I want or who I am. It makes it more difficult to strive for circumstances or an environment where who I am or what. I want or how I feel can flourish.

I first made contact with disabled groups and used these as a means to ease myself back into the community.

They wouldn't think me odd because I was in a wheelchair, would they? Although they might because I was a bit strange. But I figured this way I would at least improve the odds for acceptance.
I found out a lot of other people spent their lives in wheelchairs and other people also had disabilities that were confronting to me. I was no different from other people who have had little contact with people with disabilities and I found contact and interaction did not come always easily but also, like other people, hopefully most, I found there was always a person separate from, and greater than, more complete than, a mere disability. I also found that contact with these groups was in some ways inhibiting my reentry into mainstream community life. It was a comfortable and secure environment but one that taught me basically that I was disabled. I wanted to find out other things about myself and explore opportunities and interests that were mine.

It is with my self-initiated programs and activities like music concerts and Poetry at the Pub evenings that I began my connection and rightful participation with the world at large.

These activities were quite daunting in the beginning. I had to plan them and orchestrate them rather like a military campaign. For example, find out if the venues were accessible to me. How long they would go for so I could book taxis ahead of time. And then trust to luck and feelings of apprehension that things worked out. Originally anticipation of an event and retrospection was more pleasant that the event itself. But after a while the uncertainties of transport and venue solved themselves and the event was the pleasure. In fact for a couple of hours each month when I am performing with microphone in hand at Intoxicating Tales with the menu of the Bistro of the Commonwealth Hotel Cooks Hill playing on my mind, the world seems pretty good.

Just last year I began volunteer tutoring of children at the Waratah Orthopaedic School. This added another dimension to being out and about. Not only was I deriving pleasure from this activity but I was also, so I am told, being useful as well. And this is the important part of my finally getting out. It would be an empty and superficial exercise to just seek diversion from routine. Possibly valid but in the end not terribly satisfying. With the benefit to others, and a reason for myself other than personal gratification of a whim, there is now meaning and purpose in my efforts to move outside.

And it is an effort to do these things. The personal contact process takes time to learn, or relearn, and confidence and composure in circumstances which are often new to me takes time to instil themselves. Then there is the physical effort of moving and the dependence on others to various degrees that is tiring.

There are irritants like the elaborate and organised planning that goes into even the simplest venture. Taxis must be prebooked and venues ascertained to be accessible, and when one is told they are, sometimes they are not. Or the person with the key who is going to let you in the side door has gone missing and I sit waiting and feeling spare. And the fact that I can never be spontaneous and just decide to do something, like go to McDonald's or to the beach. Because the buses don't run and I can't afford a taxi unless the the reason is worth it. And sometimes it really does appear more effort, unnecessary effort, than the possible positive outcome of the exercise warrants.

And of course, you know, I am still close to the days when in my mind the world proceeded like a play and I was both director and writer.

It was very convenient at times. I didn't have too many problems. If I did I thought of something else. Although the game was not real, I was always the winner. Suddenly, now, there, are other distractions and influences; if not beyond my control, that have to be at least negotiated.

Surprise! Surprise! Life can be quite complex.

My ability to access available transport facilities is still fairly limited. That is, particularly for the purposes I would use them. And the regularity and predictability of services. My taste of life has in some ways become a double-edged sword. I have found enough, experienced enough, to define what I have missed out on. The door has been opened on another world but I am not able yet to fully pass through to this other place. Because while I enjoy and participate in things that I can, I must also hold. back. To want more, to want to exuberantly embrace life and all it offers would be to expose myself only to a frustration that would be excruciating. Would be to me like offering half a breath of life and no more..

But I have now begun the process of being part of the community. Have become, in fact, a part of it, there is, and can be, no turning back. The pathway before me is illuminated and I continue on the great adventure common to all of us. And anyway, why would I be so selfish as to deny you the opportunity to meet with me?

I want to talk a little, now, about the community attitudes I have encountered towards someone with an obvious disability.

As an adult, my first hand, in depth experiences have been fairly recent. As a child I grew up thinking I was something special. Grocers would give me a pat on the head and a bag of lollies. I always had a seat at the front of the picture theatre. And I never had to stand up like everyone else when they played the National Anthem. Whenever I bumped into someone's ankle they always turned around and apologised to me.

Nowadays I don't get free bags of lollies but if I bump into someone they still act as if it were their fault. I still feel a bit like a child when I am dealing with people. There is an amount of patronage and condescension, generally, from others. I do not think this is usually meant in a nasty or hurtful way, however. I think most people are rather uncertain how to behave and end up being too nice and too thoughtful and as a consequence become possibly unwittingly insensitive or insulting.
Once again I say this is a personal perspective.

I have been told by others with disabilities of unpleasant incidents they have been subjected to. I find it quite difficult to be assertive in situations where I feel my rights are being infringed or ignored. There remains with me to some extent a pervasive feeling of powerlessness over one‘s life. It obviously had its origins in the fact that for years as a child my high-level need of assistance led to an overall awareness of my dependence on others. How difficult, then, to assume an air of independence when every waking moment is a constant reminder that one has an ultimate dependence on others.

There is an ever present feeling that if someone has the power to make one‘s life uncomfortable, even in a subtle way, then it is not easy to be demanding of one‘s rights. There is also the generally held expectation that if one is in a wheelchair one is likely to be intellectually slow as well. That if, in fact, one is obviously physically inferior then one also is inferior in most other ways.

It seems to me that one has a role to play. The role of the disabled and recipient of assistance. And by the act of adoption of this role one automatically assumes a lesser condition. As opposed to the able person and the giver. There is a division, if you like, between the doer and the done to.

The role a person with disability is expected to play includes: the "nice" person, the "brave" or "inspirational" person, or, on the other hand, the "difficult" person or the "problem." One should know one‘s place. Be patient and reasonable and let people get on and do good deeds and do things for one. Or, as has been the case with some professionals I have encountered, the attitude of, "I've studied for years to know what is best for you."

Also an attitude I've encountered in people who have a limited experience of someone in a wheelchair is that they have full knowledge of, and how to handle all situations. "You'll be right, mate. Don't worry, I've got you."

Of course, that is when I do worry. That is also when I get angry. But I can't show anger or I would be difficult or ungrateful or hard to get a long with. And anyway, I might need to ask them for something or a favour, so I am going to be pleasant, aren't I?

I think, overall, that attitudes and awareness are improving and as more people with disabilities participate and are able to participate in a wide range of community activities, the attitudes and acceptance can only continue improving. This is part of the important job that a group like Port Stephens Respite can do. By facilitating such interaction and making it commonplace for people with disabilities to be seen living in a matter of fact way within the community.

From my point of view that is the most exciting part of the whole concept of Respite Care.

That ordinary, everyday, life enhancing things are made possible for all people. Special one-off events like holidays or whatever are fine. But to me it is the small things, like going to a movie or out to dinner or to the park or a concert, that weaves into the fabric of a life and gives it texture and meaning.
Although it is a pointless exercise, I can't help but feel a tinge of regret as I conjecture how my life may have differed if the awareness and recognition of the need to provide services to the disabled had occurred some years ago. Services such as this.

As I look back to another time and place it is almost impossible to recognise the small boy running expectantly to greet life. It was a time when hearts were innocent, dreams came true and mountains were for climbing.

Now Fate decreed my life charted a different course and today hearts might not be so innocent and dreams, if dreamt, may not come true but, you know, everywhere I look I see mountains around me. And they are still for climbing, aren't they?

Thank you for your attention and your response and if anyone has a question please feel free to ask. »

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