In previous blog posts, readers will remind me saying: living with the long term conditions caused by a medulloblastoma diagnosis results in disillusion with society and the inability to identify the self within the social norms of society. I have tried to explain how having no sense of the self is like having no idea of who you are. I have without prevail tried to achieve acknowledgement of this feeling. The look of complete blankness on the faces of friends and family is soul-destroying. If my brain was nothing more than a biological machine I would possibly hit the reset button- full restart. One problem the human brain is not a biological machine (not only). Our brains, our memories, define who we are.

Eleanor Roosevelt once said

I am who I am today because of the choices I made yesterday.

Elenore Roosevelt

That quote is 100 per cent correct. Who we are as individuals is past dependent. I just want to say to anyone that has ever verbalised the words: “only you can change your life”. You have no idea how frustrating and condescending that sentence is. To anyone that has been on the receiving end of that sentence, I apologise, the person that muttered this sentence has no understanding of the impact it had.   

Yes, who we are as individuals have a past dependency, just like social policy and the environmental conundrum humanity finds itself. As individuals and as a society,  we have a choice. We can stay on the road to self-destruction or we get off and try another path. How though? If our paths are past dependent, how can we change the path?  

I will admit I don’t know how to get off the path. Sometimes I think it would be simpler to go back and apply for nine to five jobs. That is a path, however, that the brain just will not go. I know there is no self at the end of that path or anywhere in the discourse of it.

My younger brother runs a successful copy write company. His company tagline is Short, Sharp, Straight to the point. I guess  I would not make a good copywriter. My point is this. As humans, we want simple things in life. Things like a home, a job, a community, clothing and food. A simple list correct? All basic human rights?

I remember Zach Braff aka J.D in an episode of Scrubs saying something like

Your work colleagues truly do become your family.

J.D

I think the above conclusion only holds true when the following premises follow

1. You have a sense of belonging in your workplace
2. There are other persons like you in your workplace.

Remember that Short, Sharp, Straight to the point tagline? Yes, that one. That is how we want to run our lives, our work, our relationships. The problem is, for 14 million disabled people and everyone else that feels they do not belong. There is nothing Short, Sharp, Straight to the point about anything in life. Except for that verbalised statement

“Only you can change your life”.  

My point is this. Despite nothing being Short, Sharp, Straight to the point – the way society wants it. Everything I have said has lived experience behind it. In a sense when policymakers say they want people who have lived experience to inform policy. What I take away is: policymakers want experts by experience to inform social change. However, as experts by experience have no understanding of the path walked, this is where experts by experience, legitimacy must stop.  

Fundamentally I disagree. I strongly believe people who have lived experience are best placed to develop innovative solutions to complex problems. For clarification what I have said about policymakers, including policy networks is subjective, based on my lived experience. Perhaps I am a little frustrated that I have been volunteering in the third sector for ten years and am unable to find an employment position in the sector. Perhaps am more frustrated that I look at the Scottish third sector and see box-ticking shadow, civil servants. Nothing against civil servants. It is just when you have been in and around the third sector you tend to hold third sector employees to higher standards. Nothing against my political colleagues either. Essentially what I want the reader to take away here is I have a lifetime of lived experience. I am an expert by experience ten times over. I am also, however,  a PPE undergraduate and Social Innovation postgraduate graduate. I see myself not only as an expert by experience but also as an expert by academic experience. I have more lived experience than most disabled people. I also have more academic experience than most non-disabled people. You would therefore think. Would you not? Those expressions of no perception of the self or no idea who I am as a person would be received in good faith-“bona fides”. Giving the legitimacy my lived and academic experience should carry. Instead, my views are met with confusion, bewilderment and disbelief. I should be grateful After all, I have a dead-end job, am underemployed and I lived longer than the five years the medical model said I should.