Lisa
Having an acquired brain injury is an element of life that is difficult to come to terms with.
As it seems to me, it is a very comprehensive and constantly evolving disability.
While being difficult to point to one singular disabling element, depending on the location and severity of injury, and then on the individual themselves, it is constantly developing.
As part of my series of human rights influenced interviews, I am doing one on acquired brain injury.
It is quite a complex and unknown area that I believe is worth examining.
I recently interviewed Anat and Manda on our common perspectives on life.
What has having an ABI meant to you? Have you realised its complexity?
Manda
Yes, you find out after a little while, once you realise what you're not able to do anymore. You don't know immediately, but you get to learn after a while.
Anat
Having the ABI for me has shown me what a difficult experience this is.
Prior to the injury, I could go mountain climbing and salsa dancing, where as, now post injury, I can’t walk five metres without falling.
I have had therapy constantly, and I think my walking has improved a little bit.
Manda
Anat, how long have you had your ABI?
Anat
Seventeen years.
Manda
Yes, it takes a long time to get used to the things that you can’t do anymore, doesn’t it?
Lisa
And to get used to the things that you’ll never be able to do again, maybe.
Anat
Although, luckily it’s given us the opportunity to increase our appreciation of the little things that before we took for granted, such as swallowing, breathing and walking two metres.
Lisa
For me, there’s nothing like walking, nothing... Anyway... Has that changed at all during the time you have had it? Your ABIs?
Manda
Some things get better, some things get worse. So I think the trick is to think only of the things that get better.
Enjoy and appreciate the good things, and try not to get worried about the things you can’t change.
Anat
I think with me, initially after getting my ABI, I felt I’ll be able to do everything again. And only later, I saw it’s changed and there’s a lot of things I can no longer do, but, it’s okay, I’ve learned to accept.
Lisa
Now, after recovering and rehabilitating, did you find that your thinking had changed?
Manda
It has to, because if you are too busy worrying about what you used to be able to do, you just get too distressed.
And to some extent, I learnt that I can do many of the things I used to do, I just can’t do them as well.
Anat
While I felt that prior to my accident, I could study many languages and many university degrees, post injury I find focusing extremely difficult, and completing sentences really hard.
Lisa
Did you find that change in society's anticipation of you? Did you find the change in your family and friend’s anticipation of you?
Anat
With me, I feel that most of society does think this is a simple hurdle one must overcome, and go forward.
And it’s taken me so many years, and it’s not little at all.
Manda
The relationships change, and initially, I got very upset about that.
But I have met some fantastic people since, some really wonderful people.
Lisa
Has society's reaction to your ABI, their knowledge of it, influenced that at all?
Anat
Initially, after having the ABI, my taxi driver would always turn to my family, friends or carer and ask them where I’m heading to.
I felt quite inexistence, and as though I don’t matter at all. I think this has improved a little.
Manda
That’s only happened to me once, at a bank. The bank manager was told that I had a brain injury and so didn’t speak to me again.
‘Hang on, I’m sitting here. Ask me!’
I think that just shows other people’s ignorance. I don't think it's a reflection on us.
Lisa
Given the lack of societal knowledge of ABI, has that affected your relationship with family, friends, society in general?
Anat
For me, luckily my family has always been quite close knit and understanding, and after the injury they’ve understood the challenges I have to overcome.
With my friends, I used to have so many. I feel like I can count my good friends on one hand.
Manda
Really decent people, I hang onto them like crazy.
Lisa
Now for my last question... Are there any positive traits to having an ABI? Perhaps traits with outcomes that you would never have thought of?
Anat
I think firstly, when we walk down the street people clear the way for us, thinking that we need lots of space, simply because we may carry a walker or a stick, which is convenient for us.
But also I feel that after the injury, it caused me to have increased appreciation of the little things in life.
Manda
If you can be positive and find the good things in life, take them and enjoy every minute. So yes, that's probably how I've changed.
You do meet some terrific people.
When people say, ‘Oh, you're an inspiration’, I think I'm not interested. I'm just doing the best I can do.
And when I can achieve something I want, I've learnt to congratulate myself.
Before the accident, I was a very, very good skier, and I joined the Disabled Winter Sports Association, and they took my skiing.
Well, I was pleased that I could even stand up because my balance is terrible.
So if I compared me now with me then, I would have had a very difficult day, but knowing that I'm not in a good place anyway, I congratulate myself when I get things right. you've got to do that.
And I think you’ve got to do that.
And if you can get good things happening, or you meet good people, or you can achieve something that you would like to achieve, then go and do it.
And pat yourself on the back for the effort.
Anat
People who hear that I have an ABI and they immediately put me in the category of ‘I must be brain dead and I can’t learn a thing’,
I love to prove to them, actually I can now speak an extra language... Five languages and I can do things that they can’t dream of.
Manda
Can I tell you something that I’m going to brag about a bit?
Anat
Please.
Manda
I’ve got four chapters of a book finished.
Anat
Manda, I’m so proud of knowing other disabled people who really can prove to the world that they haven’t stopped growing. Well done.
Lisa, good on you for making this project work.
Lisa
People have to know what ABI is all about, or some of it at least.
Well, thank you very much.
Anat
Thank you.
Lisa
I’ve really enjoyed our chat.
There are barriers for people with disability... barriers that they face in exercising their human rights.
Office of the Public Advocate
