I rarely come across disabled people who are open and honest about their feelings, and I have to say I am guilty of being one of these people. I generally find it hard to talk about my fears and insecurities even to the closest people to me, and I honestly not sure of the reason behind this, I guess partly because I want to escape these fears so by talking about them, they will become part of my reality, plus the fact that people already look at me differently as though I am weak, or unhappy because of my disability, and it seems that apparently everything that I feel or experience is attributed to my disability; which is a far cry from the truth.
I look around me and see people only showing the positive aspect of their lives whether on social media or reality, this made me feel isolated even though I knew that they were all ‘pretenders’ but I could not admit that to myself. I did not want to be the ‘odd’ one out, the one who is negative and ‘moany’, all of my life I have struggled to be accepted and to feel a sense of belonging and now that I have finally achieved that, I did not want to throw it away.
It was only recently that I realised I must change, because essentially I am not alone in experiencing days where I am low, tired of pretence and just want to drop the ‘mask’ I wear so well. This occurred when I noticed a social media account of a female living with Muscular Dystrophy who has undergone a rapid change – typical feature of Muscular Dystrophy, the sudden progression which turns your life upside down without any warning. This person shared everything with her followers, the anger, the pain and the frustration and even told us she spent the entire night crying. It suddenly hit me how brave and comfortable she is with her feelings and it daunted on me that there are so many people like me but we are so scared of being labelled that we hide who we really are.
The disabled community have always fought to be regarded and accepted as any other individual and for people to see us beyond our disability and we detested being seen as inspirational or heroic figure, so why are we contradicting ourselves? Why are we pretending to be these super humans, who don’t get low, or cry or lament our situation? How are we helping to promote and raise awareness of disability issues if we are giving a false image of it all for the sake of pleasing others.
So yes, I have decided to change the trend and discuss the hard days just as I post about the good things, though it will be tough for me to bear my soul publically but I do feel responsible for the younger generation or the wider disabled community, I want to encourage them to address things as they are in reality and to be aware that it is OK to be unhappy regardless if you are disabled or not. I took it upon myself nearly a decade ago to be an advocate for a change within the disability field, a humble attempt to make our world more inclusive and to fully do that we need to acknowledge that yes certain aspects of living with disability can and does take its toll of you, maybe not the physical side but certainly the discrimination, people’s negative attitude towards you and inaccessible environments; these are the things that really frustrates you and sometimes isolates you into a dark corner that only you and a constant question exists; ‘Why me?’
And you know what, it is natural and quite acceptable to ask that question because once you start searching for the answer you will realise that there are so many people just like you but they fear losing their ‘mask’. We are humans and not of the super nature so it is OK to have days when you are low and it is OK to speak about it, so please do, if not for your benefit then for the benefit of others.