KAREN ANDERSON: The computer may say no but the lioness will still find her roar if it's needed
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For those amongst you dear readers who have been around since I started this caper in your paper (I’m a poet and I didn’t know it) some seven years ago, you may recall me saying that I don’t want to be our son’s caseworker, I just want to be his Mum. Believe me, being his Mum is hard enough at times.
When he was much younger, I had no choice however as there were so many meetings to go to and discussions to have with folk who were either in charge of unlocking things to help him or were actively keeping those locks tightly closed against us. It was very tiring at the time, and thankfully now he is no longer in school and is not actively seeking any services at the moment, these difficult conversations are less frequent, though unfortunately not gone for good.
Thankfully, I am nobody’s fool, nobody’s victim, and nobody’s martyr and I am strong, resilient and confident enough to be able to state our case clearly and calmly.
This was brought home to us recently when the local outlet of a national company that has actively supported him in a weekly activity he loves for over seven years had a change of manager and suddenly came up with a ‘computer says no’ defence for asking him to change almost every aspect of the current arrangement.
Thankfully, I am nobody’s fool, nobody’s victim, and nobody’s martyr and I am strong, resilient and confident enough to be able to state our case clearly and calmly. First, I researched the company’s disability and inclusion policy on the web and was encouraged to discover an article only one month old where they were trumpeting their new staff training to ensure they could support people with hidden disabilities.
It was disappointing that the response was still ‘computer says no’, so I had to go up the ladder a step where I met with a more empathetic manger who could appreciate that while the company’s head office had made changes, a disabled person who had been very well supported by them for such a long time should be given some flexibility and understanding if at all possible. As I write, the situation is still to be completely resolved, but at least we are of the opinion that they are willing to try to work with us for his benefit. I won’t reveal any more detail as that isn’t fair to all the staff who have been so good to us before now.
But yet again when something like this happens, I can’t help but think how it would have worked out if I wasn’t capable of taking them on by making a reasoned argument based on their own published policies? What if I was so worn down by the whole caring role and had no fight left to keep trying to get the support he needs just to function and engage minimally with the outside world? Worse still, what if I was no longer around and he was trying to navigate these difficult situations himself?
Unfortunately, I know the answer to both these questions as I have had contact with many carers over the years who have been ground down by the constant battles and just can’t deal with another one, and I know that left alone to deal with it, our boy would just retreat at the first sign of resistance as he couldn’t formulate a plan to stand up for himself in the moment.
This is why my momma lioness still has to roar occasionally, albeit in a restrained and courteous way – even though so much progress has been made in awareness, if not true understanding.
Karen is Mum to an autistic son in his twenties and campaigns for the rights of unpaid carers to be supported in their caring role and involved in the decisions that affect their lives and the lives of the people they care for. You can find her on twitter @Karen4Carers.
