Lisa
ABI, or acquired brain injury, is a very complex disability and one that changes according to the time you’ve had it, the severity of your injury and your pre-injury self, which only reflects your post-injury self. Its expression is also very peculiar. This depends on many factors:
- the individual
- the injury
- the pre and post-injury individuals
- the date of the recovery, and
- an extremely important element, the individual’s community with whom they are engaged.
There are a few more very important things that should be considered: the community’s acceptance of the disability, influencing the individual’s acceptance of it, which in turn, can be as intricate and complex as the disability itself. As that would include going back to society’s reaction to, not only the acceptance of the disability, but you the individual — your humanity, your imperfections, your perfections too, your accomplishments, your integrity, your character, your virtue or not.
Acquired brain injury — a very sophisticated disability, involving many constantly developing and bizarre mindsets and philosophies. But that as it may, it is a disability from which there is so much to learn, about the disability itself, about the human beings with it, about the human beings, their community surrounding them. And here we see a very small, a tiny, portion of it.
One common feature in this interview is that the interview is with two people, friends, with acquired brain injury. And that’s where it ends.
The one common element between Peta and Neil is that they were both past presidents of Brain Injury Matters, or BIM for short. BIM (or Brain Injury Matters) is a self advocacy group in Victoria inclusive of people with an ABI dealing with self advocacy, that is:
- having a voice and speaking up for ourselves
- learning to own the brain injury with pride and positivity
- creating change only with positivity, and the importance of knowing that you are the only person who can tell others about yourself and your experiences.
This leads on to a most important BIM feature: community education, trying to educate your community about the extreme importance of acquired brain injuries.
How long have you had your acquired brain injury?
Neil
41 years.
Lisa
41? Peta?
Peta
I had mine since 1983.
Lisa
So, you’ve pretty much had it for the same period of time?
Peta
Yes.
Lisa
Do you remember your previous lives?
Peta
Yeah, I do.
Neil
Yes, I do too.
Lisa
How did you acquire your brain injury? Neil?
Neil
Mine was in a traffic accident. A truck ran us off the road and a pallet full of Hoadley’s chocolate bars came through the windscreen of the car and knocked me into the back passenger seat.
I can’t remember the taste.
[Gentle laughter]
Lisa
Peta?
Peta
I took a deliberate overdose.
Lisa
What has changed since you acquired your brain injury individually? Has anything changed between your past life before your brain injury and this life with your brain injury?
Neil
Yes. It's a different life.
After my brain injury, I was just like a new person, only in the same body, but a new person. So, my whole life was changed accordingly.
Lisa
I can understand that.
Peta
It’s like chalk and cheese trying to come back pre-ABI and post-ABI.
Lisa
Do you remember how you are uncomfortable, dare I say, with the memory?
Peta
No, I’m not uncomfortable. Sometimes I wish I could do some of the things I did back then. But then I can do things now that I... Say, I have been involved with BIM and I really enjoyed my time at BIM and that wouldn't have happened if I hadn't had the ABI.
Lisa
Neil?
Neil
Yeah, my memory has changed substantially. Following my accident even, my memory and remembering how to do things that previously was very difficult, and so I had to have a big re-learning and you can't really re-learn. It’s very slow. And even today my memory, my short-term memory is not very good at all.
I don't know how to describe it really. Unless I write things down, I really don't remember what I'm supposed to be doing, and I don't remember really what we're doing yesterday or two days ago. I have to have it written down to check.
Lisa
So your short term memory is that bad, I suppose?
Neil
Yeah, and it has been all this time.
Peta
It affects different people differently. My short-term memory is okay. But now is deteriorating a bit. I put that down to encroaching senility.
[Gentle laughter]
Neil
That's a bit unfair, because I'm the eldest of all of you.
[Gentle laughter]
Lisa
Do you find yourself trying to convince other people of your traits? Old friends, perhaps new friends?
Neil
I don't have any old friends.
Yes. Initially, people were very helpful and stood by you and you know, did things. But as soon as you're supposed to be well, which is probably after about a month, they decide they weren't really able to help you anymore. And so, you had to do everything yourself.
Lisa
Did you say after a month?
Neil
Well, a couple of months. I was in rehab for over six months. So, I had visitors even there. But after I left rehab, people came and say, you know, ‘That was unfortunate. You certainly had a bad accident, but you’re right now, aren‘t you?’ You know, everything's fine. And so, they expected you to be okay and when you weren't. It was just unfortunate.
Lisa
You're right.
Peta?
Peta
Well, I had not that much support post-ABI. I had a couple of visitors, but I was in rehab for six years. I have a couple of friends who I had pre-ABI and they hung in there, which is nice.
Lisa
Very uncommon, but very nice.
Peta
I don’t think my personality changed that much. I am still a pain in the butt.
Lisa
How does that make you feel?
Peta
Well, I asked my brother had I changed at all and he said, ‘If anything you’re easier to get along with now.’ Just because I can’t come out with the quick smartarse comments now.
[Gentle laughter]
Neil
I think that's true. I think that's true. And I feel I'm probably I've changed, I reckon have improved over the years. And it's just, I think it's just acceptance. And certainly, like you say, Peta, working with BIM and other people with ABI, that sort of helps you improve yourself. So, I think all those things. Yeah, we’re better people... I’m a better person than what I was.
Peta
I am. I’ve learned a lot of patience.
Neil
Yeah. I'm not as good as on many things as I was previously, but the things where I can talk to people are probably better now than ever before.
Lisa
Do you feel included in society?
Neil
That's a difficult question to answer. I mean, years ago, I'd say, no, I wasn't. But now, I guess as you get older and you're sort of doing more things, you are more accepted by other people. Okay, we don't work and so our lifestyle is different to everybody else. I mean, even like your neighbours, for instance, you know, you're not the same lifestyle as they are.
But I think they're very accepting of you. I think probably that's the biggest change. It’s just our lifestyle. When you work, you're working so you're with people and you're doing things. When you have a disability like this, you're separated from the normal or the average person's life, so you're not really joining in the same sorts of things that they are. In my case, I'm very limited to the amount of work I can do, but what I can do I can do okay. It’s just very restrictive in the time you spend on it.
Lisa
Peta?
Peta
I'm getting older, physically I am a bit more disabled. And that is having a somewhat negative impact. But the general population, either people embrace you or people run away from you.
This morning on the tram I had an incredible experience. A guy noticed me looking like a drunk donkey [gentle laughter] and he struck up a conversation with me which is the first conversation I've had in 40 years on public transport!
And he was from the country which, of course, is par for the course, but I was talking through my mask too, and making it terribly difficult for him... It was pretty amazing.
Lisa
Perhaps in certain parts of society more than others, or as a whole, do you feel in that way, do you feel included in society?
Peta
Because of my limitation I don’t feel included in society. But that’s not society’s fault. That’s my limitation, e.g. I can't work and I stay out of certain things I just can’t do. So I am limited for my full involvement in society, just through my limitation.
Lisa
I don't know if I necessarily agree, but thank you, you've covered the next question too... Neil?
Neil
Yeah. I think because my injury is very, is much more invisible than both yours or Peta's, I'm expected to be able to participate in society. People think I'm just the average sort of person, so they can understand why I have any limitations.
Peta
I guess in a way Lisa and I are lucky.
Neil
Yeah, that's right. [Gentle laughter] You’ve got an excuse. I haven’t.
Lisa
We have a visible excuse.
Neil
Yeah, they kind of question when you don’t sort meet up to the expectations. Most people I know now are more accepting of the things that I do. [Gentle laughter]
Lisa
But they're people that you know?
Neil
Yeah, yeah okay.
Lisa
With so much distrust in your memory, and I'm assuming that that's the case — your intellect, your reasoning, your humanity — do you feel you have to prove yourself to your friends, to your carers, to your family, to anybody around you?
Neil
The answer is yes and no. Yes, years ago I felt I did have to prove myself. And then I thought, why? Why should I have to prove myself to anybody? I only have to prove myself to myself. And if I'm not satisfied with what I'm doing, well, I'll try and change it. But if I don't satisfy somebody else that’s their issue. I’m not going to make any difference. Either they can accept it or not accept it. I don't care. It's up to them.
Lisa
Peta?
Peta
Ditto.
Lisa
People don’t know anything about it and they judge nevertheless.
Neil
That's very true. That's very true. Very few people know anything about it, and it's only people who have an ABI, or vey close friends or family, very close friends or family who literally live with you that know about it. I mean you can explain it all you like, you can explain it to you blue in the face. People still don't know it or understand it.
Lisa
Because it's, from what I understand, it's just so diverse. It could be like, what’s the disabling part of it for you may mean nothing to me. As what's the disabling part for me may mean nothing for you. And we've both got the same disability.
Neil
Yes, that's true. And also the fact that people just don't understand. I’ve worked out years ago, and I still go by this line, that everybody has the same kind of journey. I don’t call it a disability. I think it's just a journey. So as you initially have it, the shock and trauma of it all is very significant. And you have to learn to go through things, and in a way, you’re on a lifetime of recovery. And some people go through certain parts faster than others. But in the beginning I think everybody has similar sorts of disadvantages, like speech and physical movement and talking and doing things, everybody has those sorts of issues. It's just that some people can go through them a bit faster. And I think that's probably where I'm sort of luckier than most. Most of those things now are really invisible to most people.
I think it's just a until people learn to accept things, you're always going to have that hatred in your body, and I think that's the awkward part.
Lisa
Why would the invisibility of it be a lucky feature of the disability?
Neil
I don't think the invisibility of it is a lucky feature.
Peta
Neither do I.
Neil
I think the invisibility of it is impossible to describe to other people. Other people can’t understand invisible disabilities. They only can understand physical disabilities. So, I don't think it's an advantage. I think it's a disadvantage.
It is a very significant issue. There’s more and more people with it. I mean even if it’s simple concussion, and minor concussion, if you have more minor concussions it can become very significant and it can be lifechanging. So, people have to consider those things.
Peta
I know in jail it’s really quite high.
Neil
Yeah, it is the reason why people go to jail. It’s an uphill battle until people get to know what a person does when he has an ABI, nothing can be done. It’s really a major thing. As far as economics are concerned, governments would be very wise to invest in us to rectify that because it costs them billions in just having jails and keeping people in jail for no reason. Whereas they could work much more effectively outside that, before going into jail.
Lisa
As well as being a lot more human in the way people are treated.
Neil
That’s right, I mean it’s not really after they’ve been to jail. You’ve really got to stop them getting there in the first place. You know, recognition and support is what they really should be looking at and trying to do.
Lisa
Thank you very much for your assistance. And I am hoping, as you both know, that ABI becomes better known in society.
Peta
We got there in the end.
Office of the Public Advocate
