Whilst Hari was on the ward during admissions I became aware of some strange and morally questionable attitudes, in the hospital, towards disabled children.
On numerous occasions nurses told me that disabled children should be left to die, that it wasn't right to treat them for illnesses.
Usually they appeared to be telling me this in a very natural way - as if it was the sort of thing they said to parents of non-disabled children all the time. They would also say these things in front of Hari and my other children! They would suddenly look shocked - realising that they were talking to the mother of a disabled patient and start backtracking - 'Oh we don't mean Hari' - damn right they meant Hari too - but I took every opportunity to assure them that anybody taking this stance with Hari would swiftly regret it!!!!!!
On one occasion I was told that it wasn't fair on the nurses to keep a particular child alive! Now excuse me but nurses are paid to do a job and if they don't like the fact that a child they are expected to treat is disabled then they are in the wrong job! If they think this way then maybe they should be working somewhere else - for the protection of the patients!
On another occasion when Hari was admitted we were arriving on the ward when I stopped in my tracks at the end of a bed. Lying in the bed, propped up on pillows, was a disabled boy who was very blue and initially I thought he was dead - then I saw him take a very shallow breath. Gradually it became apparent that whatever was wrong with this little boy - he was not being treated. Nurses didn't go anywhere near him. It was clear that he was being left to die. It wasn't long before I had seen enough. I was about to go to the Manager's office and demand some action when a flurry of activity began around his bed. Within minutes a drip was put up and he was given oxygen. I later found out that one of the staff from the home this boy lived in had risked her job to contact his grandparents and tell them what was happening. This had resulted in the hospital having to treat what had only been a chest infection - potentially fatal but easily treatable - and we can be certain that treatment would not have been withheld if he hadn't been disabled.
I remember a senior nurse on the ward being furious that a particular patient was admitted. She stomped around and told anyone who would listen that he should be left to die - that it was a waste of the nurses' time having to look after him.
I was informed that the same nurse had told a foster mother that the disabled child she fostered and loved should be left to die.
And they actually expected us to trust them!!!!!!!
Those who hold these attitudes have no business working in health care. If they cannot see that disabled children's lives are equal in worth to any other life then they have no right to masquerade as members of what are supposed to be caring professions. It is not their place to judge on quality of life. Hari has a great quality of life - far better than some of the sad little lives that are led by the people who would rather she had died.