It must have been around 2010. I had asked for a review meeting with the provider of my son’s support and his care manager from social work. You see, after many months of planning, I had hoped my son’s support provider would have been actively engaging with my son in activities and meeting new people, and researching opportunities that would offer him his place in a community where he could belong.
In reality, his life was very different. You could pick any day in any week of his life – they were all the same. His life pretty much amounted to a walk around the park to see the ducks. At that time, my son was 28, and I was pretty sure that most 28-year-olds were not taking themselves off to the park each day to see the ducks. I complained to the provider and spoke with his care manager and asked for a meeting where we could address this.
On the day of the meeting, I remember being met by the care manager who escorted me to wait by the lift on our way to the meeting room.
The care manager was quite a pleasant woman with a fixed smile. During the short time we waited for the lift, she turned to me and said: “You are quite a challenging parent aren’t you?” and turned back away just as the lift door opened and we both got in. I remember not really knowing how to reply, only to utter an uncomfortable chuckle. That moment always stuck with me.
Was I really challenging?
Well, the reality is over the years I have really had to learn to challenge. At least 11 years on, my label of being a challenging parent has certainly stuck and followed me. That very same care manager still passes on my “certification” of being a challenging and troublesome parent to the local authority where my son now lives.
I guess if there were not so many hoops to jump through and barriers in the way, life might have been a little easier and less challenging.
Supporting your kids or any family member through the social care system is tough – you almost need to have a degree in legislation – and almost always you need to be prepared for a long haul. Why is this? If parents and carers get labelled challenging, well, good on them. They only want what is right – a good life for their family member.
Who are you speaking for?
I guess it was no real surprise that I’ve ended working in the field of social care for the last 30-plus years. I have campaigned and advocated for people with learning disabilities and autism to be supported to have their voices heard and to have choice, control and the right to live a good, ordinary life, just like the majority of us.
My son falls into the category of having complex needs, sometimes called profound and multiple learning disability (PMLD). I remember reading an article earlier this year in Community Living entitled ‘How inclusive is the learning disability community?’ (spring, page 12). It left me with some very conflicting thoughts and emotions.
As parents, we all believe that we know our sons and daughters best – I really do believe this to be true. Only the supporters who take the time to fully engage with our kids who cannot speak for themselves and who have difficulties communicating generally will ever learn to know what they are saying.
I have also struggled over the years with some of the self-advocacy movement and, to a degree, other professionals who put people onto their podiums to speak about the right of people with learning disabilities to have their voices heard. This is not because I don’t believe it to be true – quite the opposite. I struggle only because far too often they leave a large group of people behind because they are harder to engage with.
The self-advocacy movement has always struggled with the very idea that someone else can ever voice what another person might want to say. And the idea that this other voice could misinterpret the individual is enough to justify segregating them from their group entirely. I guess some parents do much the same by not allowing their sons or daughters to be included, as they see them as vulnerable and different from the rest. Maybe it is because they believe they need something more to be truly understood or maybe they believe they can never contribute. But all these sons and daughters have rights too, don’t they? If we deny a person their rights, are we saying they are less of a person, less deserving, less needing or just less than the rest of us?
Our rights, your rights
I have always believed our human rights are part of what define us and play an integral part in what makes us human in the society and the world we live in. Generally, we don’t pay much attention to our rights even though we all enjoy them every single day. When I took on my role with Values Into Action Scotland in 2014 as quality and development manager, I became aware of the Reach standards.
I realised that these basic standards underpin the very rights we all take for granted on a daily basis without even thinking about them. They offer basic good life indicators that scrutinise the level of choice and control an individual has in their life, and this should not be different for anyone.
I believe a good test here is the mirror test. If someone’s life is very different from mine, I ask: is that through an informed choice they have made or has someone else made that choice for them? Everyone can make a choice. My son indicates his preference for one thing over another; he lets me know when he doesn’t like something. He also makes it very clear when he really likes a person. Its only when we are allowed to have experiences that we are then able to make a choice.
I recognise that a lot of people who will be reading this will totally disagree and others will have questions. The main thing to remember is that labels can be very powerful when applied to someone, have a tendency to stick and can often lead to dire consequences.
New words
Whether it’s about the people who are being supported or those who are advocating on their behalf, wouldn’t it be so much more productive if the language changed from “troublesome and challenging” to “passionate, invested and engaged”. Gosh, that might even be productive…
I guess that’s what makes me the troublesome parent I have become today.
Liz Callaghan is a mum, granny, evaluation and quality consultant with Values Into Action Scotland, community broker with Self Directed Support, fitness geek, and wine and gin lover
