Pioneering the way forward

I have mixed thoughts on this. I am satisfied with the fact that I have made life easier for disabled children younger than me through paving the way forward in the schools that I have attended. I would also like to think that I've changed people's perceptions of disability and that through knowing me my friends/people I've worked with do not judge disabled people negatively. BUT I find myself thinking 'when can I stop pioneering and just be a person?'. It is hard to separate the duty towards being a disabled role model from my everyday life. Its a huge pressure and means that every setting I go into, there is an expectation that I will transform into the epitome of the life of the disabled which I'm just not. I do appreciate it when people recognise that I have battled against many obstacles and I do believe that there is a need to advocate change. It's just not a role I chose.

"Miss Greene, I did that all by my very own" Child, aged 5

Control and privacy are my biggest hurdles at times because I don't have a lot of either. I don't have the control or security of knowing that I can take care of myself and my own needs. I cannot decide what information about me is private and which is public. It's very difficult to feel in control when every decision that I make involves another person and when four or five people are involved in my personal care every week. I do not want to live my life being vulnerable or dependent on others. I am sometimes desperate to just be me and take care of myself but I know that it's a scary position for me to be in because I'm vulnerable and am without the support I need. It's hard for me to live life being forced into the position of a child and without the independence that I crave. One of the reasons that I am drawn to teaching is that I can identify with children in this way. I have to get a balance between being on my own and struggling and having support and privacy. I have not yet found a way to do this.