The medical profession defines me as requiring ‘constant care to cope with all activities of daily living’. On paper, I sound as if I am incapable of doing anything for myself, but this is untrue. I am able to think for myself. However, unfortunately, the physical implications of Cerebral Palsy don’t allow for me to be alone with my thoughts very often.
My name is Rebecca and I am 28 years old. I have had ‘Congenital Athetoid Cerebral Palsy’ all my life, which means that I have a great deal of experience with the frustrations of being largely reliant on others. Of course, all of this is normal to my life, but sometimes it would be nice to not have to always make conversation with those around me. This is not to say that I’m an unsociable person, but like any other individual, I have days where I would enjoy just my own company. I understand that my personal care comes first, but this reliance on it can be frustrating.
Luckily for me, my parents are able to undertake the personal care role, though it is a worry that sometime in the future I will have to be comfortable with potential strangers assisting me in this way. It took me a long while to be open to the idea of employing Personal Assistants, although since I have eventually come round to the idea, I have found that having PA’s does give me a greater sense of freedom (though this arrangement still entails that there is someone accompanying me at all times). The relationship between my PA’s and myself is a compromise, because it consists of professionalism combined with friendship. Consequently I do my best to make activities relevant to whoever I am working with, and whilst I don’t usually mind this, it means that ultimately I am not able to do things entirely of my own accord.
As a person I can be quite spontaneous with my plans, and self-admittedly stubborn if I don’t want to do something! This has created problems because often I would like to spend time alone, but if I cancel an event or a PA visiting at short notice, then my parents’ plans are also impacted upon. My CP doesn’t allow for the luxury of spending a lazy day on my own in a way that I choose to, because people will have to fit around me just as I have to fit around them. There have been many times that I would have liked to have made a swift exit from awkward social events, but obviously I am unable to get home alone. It’s difficult to explain this paradox of trying to be alone with another person, unless I view them as an extension of myself. But even when I have a small request to make, this immediately reminds me of the reality that I am still amongst others.
I believe in balance in all aspects of life, and this requires some time alone, alongside time spent with others. I’ve never really liked the word ‘independence’; I find it patronising and effectively meaningless to me. If the language in respect to disability were revised and adapted, I think that this would create less exclusion from the meaning of the words. I have accepted that independent living will have a slightly different meaning for me. Thus I would like to work towards a redefined version of freedom in the best way that I can, rather than being made to feel as if independence might be unattainable for me. If I keep this in mind, then I know that through independent thinking, I am in fact able to be alone at any time I want.
Cover photo by Brian Hillegas
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