Because of my level of cerebral palsy and the fact I dribble/drool, I wear a neoprene bib all the time when I am at home to keep my clothes cleaner and to prevent chest infections from a damp t-shirt. This is a personal choice and not everyone with cerebral palsy would need or want to wear a bib, some absolutely detesting the very idea, but for me, it works. It is not only useful but it is also a part of my identity and those of you who are observant will see that I am wearing a bib in my profile picture.
Bibs are just one of a whole range of equipment I find useful to use which others would find too ‘baby-like’ or medical to be comfortable with including nappies, plastic cups with lids and of course my helmets in case I fall. I even use big plastic smocks with sleeves for meals before I have important meetings so I can at least look clean at the start! It is a reality many disabled people will find odd and uncomfortable while others will know exactly what I mean. More importantly it is a reality that is an important part of my identity and a part of who I am, and chosen to be.
I can either resent what I need or embrace them with a pride for understanding who I am. Why should I compromise what is useful to me because society is uncomfortable that the image the equipment I need offers, or that many professionals may be worried about the illusion of infantilism rather than what people may find useful? I learnt a long time ago it is less stressful and more rewarding to learn to be myself, whatever that may be, rather than try to be what others may wish me to be, whether that be family or society at large.
It is clear from my previous article on what barriers disabled people face in being happy, that a large minority of disabled people have not reached a point where they can even imagine they can be happy with being disabled, let alone have pride for how they are as disabled people. I think it is important to say again that by happiness, I mean an inner stability and wholeness as opposed to any sadistic love of pain, difficulty and discrimination. Being happy is an identity thing rather than anything else and so many newly impaired people have a disjointed identity as they come to terms with their new situation.
But in the way I can recognise and accept where they are in their journey, something society seems more ready to embrace, they must also recognise and accept where I and many others are in terms of being positive about who we are. It is something which society is starting to accept and embrace. I feel positive portrayals of disabled people in the media, like the Paralympics and I’m Spazticus, have helped society to embrace a positive side to disability but it is important not to over simplified the situation by assuming these are in anyway representative of all disabled people.
Identity is personal and comes from the large and small complex choices we make including how we dress and interact with others. I know for example that the fact I wear a helmet when I go out means that some people wrongly assume I have learning difficulties, if they do not already think that. But I have chosen to ignore this and wear one anyway to reframe the image of a helmet user as well as preventing head injuries. I am also aware that I have as someone with uncoordinated movement, got a level of freakish approach, which I need to embrace to be successful as a contributing citizen. Freakism has the often amusing power of catching people off guard and allowing myself, the supposedly vulnerable one, to get the upper hand until they are able, if possible, to compose themselves.
While some people would find it rather offensive to have pride in what many see as weaknesses and symbols of vulnerability, I would argue why I can not be proud of who I am and indeed when I have been very depressed and frustrated with life, it has been my pride that has kept my going and this is why ‘Proud’ by Heather Small is my personal theme song. I believe everyone should have the opportunity to be proud of who they are, warts and all, and that society should support people to have strong self-identities.
I am proud of wearing a bib because I am happy and comfortable about who I am, even if it is very different from the norm or what is expected from me. I ask others to spend less time judging myself, or anyone including themselves, and more time being proud about who they are from the choices they make.
If you like what I say, have a look at my site at www.simonstevens.com or follow me on twitter, @simonstevens74, or even leave me feedback on +44 (0)121 364 1974 or email firstname.lastname@example.org