Holding up a mirror to our humanity

Taken from the blog 100 Rightful Days by Louisa Whait

When I started this blog – hence the 100 days, I imagined I’d have lots of new things to say every day. Lots of pearls of wisdom and reflections. It transpires I don’t.

I have frustration and exasperation. There are moments of joy and triumph. I quickly became conscious that repetition is a huge risk. The same thing over and over, no change. The biggest challenge people with a learning disability face is the changing the perceptions of society at large, it is inexorably slow – hence why repetition. It may be a cop out but instead I will publish 100 reflections – not over consecutive days as it will become meaningless I feel.

I’ve been reflecting a lot over the last few days. It started from a very left field point as I was watching the now formerly, comedian show ‘Nannette’ by Hannah Gadsby. She was a lesbian comic who was once criticised for not having enough lesbian content in her show. Not quite sure how she could get more in!!! Anyway…… Hannah made a few points that I think are very relevant to the treatment of ppl with a learning disability and their families. She talked about comedy acts being made up of a series of jokes, 2 stage process: set up and punchline. This completely misses the story – indeed if the story were told the humour would be gone as she proved in the latter half of her show (please go watch it – now on Netflix). She spoke about her internalised homophobia – she grew up in Tanzania where homosexuality was illegal until 1997. She grew up being told by society she was less than, she wasn’t normal. She was brought up to be homophobic – complete dissonance to who she was / is.

It struck me that this is not dissimilar to the treatment of people with learning disabilities and their families – not normal, less than. I’ve lost count of the number of parents I’ve spoken to or read accounts by, who were told by medics – don’t raise your hopes, your child won’t develop, your child won’t achieve anything. The medical model at the root of this view. The blame of achievement or lack of it firmly with the impairment not recognising the societal contribution to disability.

Hannah talked about Humanity – where is our Humanity that it is acceptable to treat anyone as less than, as not normal. What is normal? To me, normal is self-determination, setting your own path. The outcomes for each person different by the inherent complexity of humankind.

On my travels yesterday, I then listened to a podcast by Adam Grant – a corporate psychologist. (Adam Grant, Worklife. How to Love Criticism). He discussed a unique approach to criticism pioneered by the CEO of an investment company called Bridgewater. They actively encourage criticism. Anyone can critique anyone else, it’s not for everyone but by embracing this – embracing the criticism, reflecting and considering how to change – if the desire to change, do something differently is there has become a powerful tool for self-growth.

He went onto talk about a study on how people acted when there was a mirror on the desk. Less likely to cheat. My mind was whizzing. How do we hold up a mirror to humanity? How do we support people to really look in the mirror? To really reflect on their actions and values. We talk a lot the “mum” test. That’s a very narrow view – it assumes a culture where we care deeply for our parents putting our wants and desires above theirs. Societal narrative in the Western world would suggest the opposite is true. We need to take responsibility. Can we look in the mirror and say “I did the right thing by that person” – not FOR, by. “FOR” implies I know what’s good for you. Doing right BY you is so much more. The professionals I have come across that I respect and admire the most are the ones who aren’t afraid to look in the mirror. They don’t always like what they see, they remember that self-criticism and work on how to be better, how to keep in touch with their humanity.

I met a manager yesterday who oversees a number of residential services. She talked about an incident the day before which lead her to tears. My response – good. Not good that something that had happened that evoked that reaction. Her reaction itself was good. Tears show humanity. She said later than when the tears stop she’ll pack up and go home because she will have lost her way. I shed tears at least once a month. I shed tears at the stories I hear – not the case studies, the clinical version of events. The stories. We need to tell people the stories of people with a learning disability. We need to tell the stories of their families. We need to tell the stories of people who provide paid support, we need to tell the stories of the managers. We tell to tell the stories of the humanity of people with a learning disability. I ready Sara Ryan’s story about her son Connor in a day. I laughed, I cried, I screamed in my head. I have spoken to Richard Handley Mum and heard her share Richards story – I laughed, I cried, I screamed in my head. How do we treat anyone in this way? How can we not hold up a mirror and ask ourselves – is this OK? NO, NO. NO it is not OK. Their lives were valuable. Their lives continue to be valuable. How much more valuable would they be if they were still alive, contributing to the lives of others.

Hannah’s “jokes” hid the story. The story was so much more powerful, reflected humanity – and the lack of humanity shown to her. The case studies of Richard and Connor and countless others hide the true story. Their story was about no humanity. Being less than. Not mattering. Being seen as irrelevant and as a set of conditions. No one expecting anything – except their families and those that knew their story. People have spent their whole lives being told by society – you are less than, your child is not normal. Why is it Ok for us to say that? By saying that we are taking away their humanity, their normalness. There is no self-determination only a cracked mirror that only those who choose to look can see.

We need to look in the mirror to find our humanity