I have written a number of articles in recent times about hospitals and this one could be regarded as the dessert.
I should explain I am not annoyed at hospitals; the staff work hard and do their best. However, when you are a complex user, it remains difficult due to no one fault.
I found identity is an issue in hospital. Nurses often see just a patient in a bed and when you look like someone has having sever learning difficulties it makes live interesting.
The reality is a matter fact I have somehow become an internationally hyper-intelligent disabled activist, which sadly has no meaning when who have just a gown and ‘pad’ on a hospital bed.
I have cerebral palsy, basically brain damage due to a lack of oxygen at birth. The condition can vary considerably from a mild limb to very complex needs, and I am somewhere in the middle,
My first issue is paramedics refuse to take wheelchairs despite them having a legal responsibility since 1995. The local manger stared at me blankly as I pointed this out.
So, no wheelchair changes the game. I am now bedbound and therefore double incontinent which means wearing and using pads 24/7, and likely a catheter. My identity is now compromised.
I have produced an inclusion passport which is an illuminated booklet about what I need about hospital. After writing over five versions in two years, this document has been a lifesaver, but it can only so far as I am still a patient in a bed, and a retarded looking one at that.
I look around the wards at 45 as I did in my 20s. I often remain the youngest as I see them as fragile old men as they see me as a young drooling spastic. We all have identities and stories that get lost in hospital.
Staff are focused on our medical condition that becomes our identity, often without taking our social background into account. The staff can often consider your condition new, when in my case it has been lifelong, so you get despaired by their overreaction to something you dealt long before you was they were born.
In my last hospital visit a physio insisted I prove I could walk before I was discharge despite being mostly a wheelchair user. I met this challenge with boredom, irritation and wanting to ‘have words’ when she felt so happy that she cured me (not)! It reminded me of the idea of a blind man going into hospital to have ingrowing toenail removed and then being told he could not be discharged until his sight got better!
Our health is a small part of our identity, but the rest of our identity can not be lost. I know it is hard for staff to obtain backgrounds in a busy ward but its an issue that needs consideration.