Heather

Re-Inventing Identity

By Heather Hill
c/- Dulwich Centre Publications
Hurt St PO Box 7192
Adelaide SA 5000
Australia

* This article evolved from an interview with Grahame Simpson. Grahame's probing and insightful questions allowed me to reflect upon the difficulties and experiences I have encountered.

Some years ago I was travelling with the man I was to marry when he fell asleep and the car crashed. He was not physically hurt, but when I woke up from a coma about two months later I could not walk, talk, dress, or do much of anything. I could not remember the accident, or anything that had occurred in the weeks just prior to the accident. I could no longer brush my teeth, feed myself, or even blow bubbles. I had sustained a severe brain injury.

The impact on my sense of self was profound. As my brain injury involved a degree of amnesia, and a sense of self is tied to memory, maintaining my identity became difficult. I had to come to terms with this new identity of being disabled.

Often phrases such as 'regaining identity' or 're-establishing identity' are used to describe the process of rehabilitation, but I don't know if I would use these phrases. I prefer the phrase 'reinventing identity'. The woman I was prior to this injury, the identity I had, is in many ways no longer here.

Throughout this process of reinvention I have never focused for too long on all my losses. Some people have called this denial, but I prefer to see my response as realistic. I needed to accept that I was not the same individual as prior to the accident. I knew I couldn't walk. I knew I couldn't talk. I knew these things but for me it was a case of 'I cannot do these things yet!'

Re-Invention and History
The other day a journalist I was speaking with asked what I did prior to acquiring my brain injury. I asked her why it seemed so important, and her reply was that knowing a person's history allows her to place the whole person into context. This makes sense to me, however, the difficulty is that most brain-injured people have amnesia or difficulty remembering events or conversations that took place three minutes ago, let alone months ago. Most people with brain injuries are intelligent, it's just that their short-term memory is on holiday.

I have become more attuned to certain ways in which the past is referred to that seem unhelpful. When people say things to people with brain injuries like 'you would not have done such-and-such before the injury', I think this is dangerous and limiting. Referring to the past in these sorts of ways can be diminishing of present experiences. In my experience, it is important that people understand that the person with a brain injury is not the same person as before. If a person is finding what they are doing now unacceptable then it would be far better to tell them and tell them why - rather than relating it to their history. In this way it is acknowledged that the person's amnesia is not a farce, but also acknowledges that, with continual reminding and assistance, improvement is possible. Exploring the sorts of futures that may be possible, and the steps involved, is often more constructive than focusing on the past.

Of course, there are elements of our histories that are available to us and acknowledging this can also be helpful. For example, without my strange sense of humour I think the process of reinventing my identity would have been far harder, I would have stayed with my frustration. I think perhaps my strange sense of humour came from having always been different. I grew up in Japan with blond hair and blue eyes. I was born into a family of nine boys and only one other girl. I think this sense of difference has been a resource.

Encouragement
All along the way, persistence, not giving up on myself, in trying to establish this new identity has been of paramount importance. If I gave up or if I said I can never achieve this, whether this was re-learning to feed, write, talk, walk, who do you think would have believed in me, in the possibilities for my future? My plans for my future were often seen by others as 'unrealistic'. All I want to do here is emphasise the value of encouragement and point out that for health professionals to eradicate people's hopes can be destructive. If someone strongly feels they can achieve something, they deserve support. This, I believe, is especially true if that person has amnesia.

Resisting Disempowering Practices
Since the accident I have been witness to, and subjected to, many disempowering situations. One example is that as a grown but disabled person, I am continually asked personal questions by professionals such as: 'Do you live with your parents?' 'Who takes care of you?' etc, etc. At first I found this perplexing, so I asked a doctor friend, 'Why do you always ask me about my father?' His reply was wonderful, 'To know that you're being cared for'. I realised that this is sometimes where people's questions come from and why at times people feel they need to know. Many times it comes from the heart and in this regard it is sweet. However, this doesn't prevent the questions from being demeaning, as they imply that I am unable to look after myself.

Words and phrases aren't just neutral. For example, there is a subtle but profound difference between being told you are 'brain damaged' rather than 'you have acquired a brain injury'. Since sustaining my brain injury I have tried to find ways of speaking that reduce the possibility for promoting controlling or disempowering ways of relating.

Take the word 'help', which is an Anglo-Saxon term. It can be used in ways that mean 'assistance' but it can be used in ways that mean 'control'. When someone is less able than you are, there may be a tendency to 'help' in controlling ways - similar to the ways in which many parents act towards their children. I have been asked so many tunes, 'Do you need my help dear?' My response is now, 'I would very much appreciate your assistance, but I do not need your help'. Of course there are times when I use the word help, if I am unable to do something on my own, like carry a drink without spilling it. I may ask for help, but for most things it's more asking for assistance. I find it important to try to make the distinctions in language.

Attitudes of the Culture
When I was in my wheelchair and my speech was extremely slow and without intonation, some people would speak with me and would try to encourage me by saying, 'My dear, you are not disabled', or 'I don't see you as disabled'. And I would think, 'Really? How more disabled would they like me to be?' On the other extreme, when I first began re - teaching myself to walk, I was rather unstable. One day, I was walking along a footpath to do some shopping and a woman who was in a hurry brushed past me without considering that she might bump into a disabled walker, she did, and over I toppled. She kept walking while I got a new horizontal look at the sidewalk!

Some people's reactions are so funny. Many people with brain injuries are physically normal but this does not mean that they have not experienced great changes. My girlfriend looks fine but has an almost non-existent short-term memory. If we are out most people speak directly to her and ignore me. This is pretty amusing as she cannot remember what the person said at the start of the conversation! It seems that most people think if someone looks the same they must be the same.

Somehow this leads to people thinking that someone who has amnesia and looks perfectly normal is just forgetful!! Many people think that amnesia is similar to a person forgetting something that they've put on the stove, or forgetting their car keys, but it is not the same! Amnesia brings added responsibilities to a friendship.

One attitude that I find particularly frustrating is that, unless you are in paid employment, most people seem to think you do nothing worthwhile. Where does this idea come from? On the other hand, sometimes people can't imagine people with a disability doing anything worthwhile! A while back when I was doing my Masters degree at university, people would ask me 'what do you do?' and when I would reply it was like, 'Sure and I am the Pope!' A few individuals would believe me, though most did not.

When your speech is slow and monotonal most think that this is a reflection of your intellect, so how could you possibly be at university? When I could not speak easily it was not unusual for people to tell me what I wanted, complete my sentences, or shout slowly back to me as though I was hard of hearing and intellectually not all there. It has been my experience in the vast majority of my interactions with strangers that if you speak slowly or without expression they do not listen. I have found that, if I ask for something and the response I get is not in anyway appropriate to my question, I just have to realise that I'm doing my best to be understood and leave it there.

Sometimes other people's attitudes are frustrating and it is important to maintain a sense that the problem is with other people's attitudes and not with me. At other times, however, I am left thinking which one has the brain injury?!

Social Action
In order for social healing to take place in our culture in relation to issues of disability, ongoing social action organised by people with disabilities will be required. But we'll have to take care with the process of this social action. My experience with community organisations has sometimes been traumatic. I am a brain-injured individual who is also academically accredited after acquiring my brain injury. Sometimes this makes me useful to organisations as when they want something done it is like: 'No problem, Heather knows what to do, she just got a high distinction in her Masters'. But, if Heather made any suggestions that they disagreed with, then very quickly Heather was a 'poor brain- damaged girl'. Suddenly a different attitude was apparent - that when you're disabled all you're supposed to do is sit in a comer and write poetry! Recently I have been working with various community organisations to establish a service for people with brain injuries. This has been a very enriching process.

The service is a community access service which is awe-inspiring as it has respect for the insight that experience brings, and has real live people with acquired brain injuries on its advisory committee! Accountability of services to those they serve is so important. It is incredibly rewarding to be able to share experiences with other people who have brain injuries and those who do not.

Identifying As Disabled
There are many people who have brain injuries who don't want to identify themselves. They say, 'Who me? I haven't got a brain injury'. There are a number of possible reasons for this. Firstly, there is still so little known about brain injuries and there is a lot of resistance in the community to acknowledge the extent of brain injuries and their effects. I can say from my experience that brain injuries do exist! The fact that I have been able to progress through many levels of multiple disabilities means I can also say that long-term progress is possible in some situations. I think what I have experienced is extraordinary. All I am really wanting to do is to make the path a little less horrible for those people who have acquired brain injury.

Another reason why some people with brain injuries don't wish to identify themselves is that, within the disability sub-culture, there is sometimes a disrespecting of those with brain injuries. At times I feel like shouting, 'Come on people, we are all disabled!' I am committed to finding ways in which we can focus on our commonalities rather than in- fighting within this sub-culture.

Of course the major reason why people don't want to identify as disabled or identify as having a brain injury is because of the difficulties of dealing with the attitudes of the general community. As I became less outwardly disabled I really had to think about whether I wanted to continue to identify with the 'disability subculture'. I began to have the option of rejoining the general community. It's quite a difficult issue because holding onto identifying as part of the subculture can be perceived by others as 'holding yourself back'. People say things like: 'Why don't you move ahead, move on, and move away from it now that you are able to?' 'You are less outwardly disabled now, why identify with it?' 'It will hold you back.' It is seen as a sign of progress to some, particularly in the able-bodied community, to be able to let go of your connection to the disability subculture and identity, and to become part of the anonymous general community. But I am definitely not happy with that idea. I am brain-injured and, for me, letting go of this knowledge and culture is not a form of progress. The fact is I still have some disabilities even if they are not as bad as they were previously. Part of the reason for doing my degrees was so I could educate people about brain injury. I can do this more powerfully from within the subculture. I am a part of the disability subculture now - if I can assist anybody else, if I can make the route a little less hard, fabulous!