People on the payroll often seem to be much more comfortable and understanding about the front line cuts, waiting lists, poor and shoddy services endured by people with disabilities and their families -go figure!
I have come to the firm conclusion that there is no substitute for personal involvement to engender a position of true understanding or empathy. I watch people glaze over if I go on too much about the injustices displayed towards the vulnerable in our society. A work colleague who talks the talk regarding equality issues recently began yawning in my face after asking about my disabled son. Many of the “professionals” that we have encountered thus far on our journey come with baggage in the form of thinly disguised contempt for the position of the clients they are paid handsomely to serve. They are non committal about massive deficits in service – I know, it’s called being professional – and are economic with the truth. Defending the indefensible in my opinion does more harm than good to our society however I guess it depends on who you see as the important people in the system. Far too often professionals are looking upwards on the ever popular hierarchical models that local authorities seem to like so much instead of across the table at the people services are supposed to be about.
Recently I have been having extra correspondence with several agencies involved in providing services to my children. I regularly have to advocate on behalf of Andy to try and secure very basic resources and services for him. It is not something I particularly want to spend my precious down time on but I often feel I have no choice in the matter.image
My commitment to my kids and Andy in particular, given his needs and vulnerability, will just not let me do anything else. I have to strive for the very best I can for him.
This week I had been having something of a crisis of confidence such is the lack of interest and support from some quarters for actually caring about services and how families living with disability are treated. The more I considered it though and spent time either with Andy or reflecting on his needs afterwards the more my resolve strengthened. I am determined to keep challenging poor service and inequality. I will not be put off by insulting behaviour, posturing and half truths. Through our new parent support group we are seeking seats at the committee tables where the voice of our children will be heard. We will be engaging with other advocacy groups and projects and asking questions. We will be spreading sound information about legal entitlements and how to challenge decisions. Our precious children deserve nothing less.

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