Acknowledging Disability

It took me a long time to finally accept the monumental change that had happened in my life. In my past posts on Independence, Health, Employment and Taking Back Control, while being focused on being able to live as an independent adult with our own lives have all had a common theme of acknowledging where our strengths and weaknesses lie. In essence coming to terms with our disabilities.

Coming to terms with having something like brain damage and accepting myself as a disabled person, was a really difficult thing for me to do. However, more than six and a half years have passed since the horrible night I suffered my brain trauma and I can confidently say now, without fear “I am a disabled person with brain damage.”

Now, I used the word “fear” there. I personally think that’s interesting when I consider my brain injury in the grand scheme of things, purely on a human level. I have to then ask and analyse myself (again!) what was it that I was afraid of?

A Short Series Of Questions

So here I have to ask questions to myself, what were the things I feared that made it so difficult for me to admit that I was disabled? Was I afraid that, by admitting to myself and to others that I was disabled, I would be excluding myself from the rest of society? Did I fear rejection, ridicule and prejudice in a society that increasingly seems to be turning a blind eye to the plight of those in need? Where, in this new sense of self that I was coming to terms with, would I fit in? Finally, had I subconsciously adopted an unknown, subconscious prejudice (not vindictive, violent or exploitative, more a feeling of discomfort when in their presence) against “the other”?

A Short Universal Answer

The answer to all of these questions is yes. I realise I may be making myself seem more unlikable to you in admitting that but I feel it is only fair for me to be truthful. I would be doing you a disservice if I made up some weak, halfhearted excuse as opposed to telling you the truth that my fears were based on basic human instincts; the need to fit in, the need to have a place and a role in everyday society, the need to be “normal”. Of course these are things that everybody wants really. They make for an easier life, a life you can float through without analysing, thinking for yourself, challenging or disrupting the natural order of things. What I see when I look at all of those previous questions and the answers I have just given is that the fear that stopped me accepting myself for who I am after my brain injury is one very basic, human fear…

The Fear Of Change

The fear of change is a very basic and, quite honestly, understandable fear. As human beings we like security; we like to know when our next paycheck is coming from, that there is food in the fridge and that we have a job to do when we get up in the morning. It is obvious that this gives us a feeling of safety and purpose each and every day. So when something occurs that has the potential to disrupt that harmony, something that could take away the things we rely on to get us through life feeling contented and secure, it is only natural that we are wary, cautious or afraid of that change.

So when we ourselves are fundamentally changed from the inside to out, the organ that controls our speech, our movement, that voice in our head that help us make decisions, decide what to say or do, the consequences to our cognitive abilities is damaged so that we are (I realise I’m speaking universally here but I’m only speaking from my own experience) an almost completely different person to who we were. That is a terrifying prospect for both patients and their families. That the person you are and that they love will be different from the one that they know, have known for years and that they love and cherish.

I don’t know about anyone else who may be reading this, but I feel as though my brain has been switched with someone else’s since my ABI. I am a totally different person now. Taking on the challenge of recovering from an acquired brain injury is taking a step into the unknown; as I said it feels as though my brain has been witched with someone else’s. It’s like a game of roulette; you never know what number the ball will land on or whose brain you will get.

Carrying on from that, what do we rely on more than our own brains, than ourselves? When someone has suffered a brain injury, not even the best experts and consultants are willing to predict the ramifications and consequences until the patient is fully awake. So for those on the outside, looking at a brain injury patient it’s the fear of the unknown. Not knowing how much of the person that they knew and love they will get back.

What Do We Do?

Fear, we all suffer from just in different ways. When I look at the questions I asked myself earlier (barring the prejudice one), they are all reasonable and similar questions one would ask themselves in other more conventional life changes. For example, if they were moving to a new place, quitting their job to start a new business or getting back into dating after a divorce. Those types of fears are deeply rooted within us; the fear of change and of the unknown.

It’s what I have come to learn. Life itself is an unknown thing, full of change. We can’t control everything all the time and we never know what is waiting for us right around the corner. Whether that is meeting the girl of your dreams in a café on your lunch break for example, or suffering a brain injury on a night out. Life is peaks and troughs. If we can accept that life is an unknown, that it has good and bad elements and if we can embrace the fear that comes with that and confront it head on, we can move forward accepting ourselves for who we are.

I can safely say that I have fully accepted that I am a disabled person. Confronting the fact that life will change and it will throw bad things at you has made me a stronger person. Now that I have suffered my brain injury and have seen what is truly the harsh side of everyday life, because of the strength and the determination it has given me to prove to everyone that disabled people are incredible, brave, valuable and talented, despite the disabilities I have now, I wouldn’t go back to the person I was before.

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18 thoughts on “Acknowledging Disability

      1. I feel that ‘a disabled person’ implies that the disability defines the person whereas there are lots of other attributes that are clearly part of the equation.
        A ‘person with a disability’, on the other hand, is someone who is a person first and their disability is part of who they are. They may also be a person with a great sense of humour, wonderful compassion, a love of dogs, a keen interest in politics …..
        Does that make my point any clearer?

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      2. Yes that does make it much clearer. To be honest, I didn’t really think about the semantics of how I was phrasing things. I apologise if you feel alienated or offended by the way I have phrased things. I would say that I don’t allow my disability to define me and I’m sure anyone with a disability would say the same. I simply chose a phrase while writing my blog which I thought appropriate and that I am comfortable with.
        In my defence though, I would say that the contents of my posts are generally positive, with an affirmative message and trying to give people hope, that I don’t apologise for. I don’t feel as though I have generalised people with disabilities.
        I am not trying to be combative in any way. I just wanted to say my piece.

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      3. Oh you didn’t offend me at all. It’s just that the terminology is not what we use here in Ireland and the notion of ‘disabled person’ is perceived here as being much more negative than ‘a person with a disability.’
        It was the use of the terminology alongside your positive message that seemed a bit at odds to me.
        I think your piece is very useful indeed.

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      4. Well I’m glad I haven’t upset you. We seem to have got our wires crossed. I will try and remember (always a problem for me) what you have said and the significance of it.
        Thanks very much. I’m glad you have it useful and thanks for engaging with me and the post. I’m always open to feedback and always looking to improve.

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      1. I couldn’t agree more. It’s hard coming to terms with what is essentially a new you in terms of the way you think and the way your brain works.
        It’s even more difficult when the people who see you believe you to be perfectly fine and when you try to explain to them what is wrong, you can’t express in a way they understand, made all the more difficult by the fact they have absolutely no frame of reference for the type of difficulties you are describing and why it’s so hard.
        It can get better over time though. It’s about finding the right people who love you for you and loving yourself for who you are in spite of your disability. That’s how I got around that. Be proud of who you are.

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  1. How true and similar our lives are I have found on return to as normal as possible for the new me. That it’s difficult as almost no change on the outside that I am in fact disabled on the inside that people/work react and expect me to be the same as before and don’t believe me. Brain doesn’t respond in the same way as before reactions are different. Having to keep oneself in check constantly as not to offend or over react is just one hard battle. Which then comes depression & self harm. Suicidal thoughts often overwelm. What now? Thx for your blog makes me feel my life is worth fighting for.

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    1. Marie, I’m so sorry that you have had these struggles as well. I know that it can be overwhelming. The feelings, the way you are treated and the thoughts that go through your head when you are coming to terms with this change were sickening for me and clearly they are for you to. There is no shame in being disabled or struggling with it.
      Please, if you’re having these kind of thoughts seek out help. If I can achieve only one thing out of this blog it would be ensuring that you don’t act on any of those suicidal thoughts that run through your mind.
      I didn’t think I had a future at one point. I was in a position where I was contemplating those things. But I didn’t do it. Brain Injury is something that can be overcome. Please, share your feelings with someone who can help you. You have a place in this world, you do! You have things to contribute, things to achieve and a future. A life to live.
      I’m sending all my love to you. Please keep fighting and a find a way to get those negative thoughts out in a way that is expressive or can help people. That’s partly why I started this blog. Maybe you could write one too. Please don’t give in to this horrible situation!

      All my love,

      Tom

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