Meg Lewis has lived experience of using Shared Lives support and has spoken powerfully at events about her experiences of different kinds of mental health services. I love this guest blog that she has kindly written, which reminds me that the big issues like equality, start in ‘small places, close to home‘. Meg writes:
In the many, lovely Shared Lives stories that we hear, the same thing jumps out at me: people being treated as equal. Not making assumptions about people based on their disability. Equality.
But you know what? People don’t always work that way, even people who live in Shared Lives.
There’s a Shared Lives party at a local club. Being someone who doesn’t go out to social events often and being extremely self conscious, I have butterflies in my belly and it takes me 3 hours to get ready and choose an outfit and finally decide on the first one I tried on. I forcefully tell myself I look “fine” and manage to get out of the house and arrive at the party.
I like a beer so I head straight to the bar, exchanging smiles with anyone I accidentally make eye contact with. I’m a bit hot and flustered but, now, with a beer in my hand and spotting my carers at a nearby table, I chill a little and head over to sit with them. Those familiar faces and easy chit-chat ease me more.
It’s getting rowdy on the dance floor. Karen, a lady with down syndrome, is looking sassy and showing us her ‘twerk’ and Joshua (he has autism and a non-mobile hand) is raising the roof with his beat boxing and throwing some shapes. I’m feeling settled now and want to get in on this fun! So I pick up my drink and joking them on the dance floor. We danced our socks off when Proud Mary came on! Buzzing! I go out for a cig to cool down and that’s pretty much how the next hour and a half went. Drinking, dancing, smoking outside for a cool down. But after a while I started noticing the disapproving looks, eyes rolling, a “tut”at the bar. My mind starts racing at 100mph…”No one likes me”, “I must look stupid”, “I’m ugly”, “What have I done? “, “Everyone hates me”…..”I hate me”.
I sit at the table and play with the beer mats, no more dancing, and I wait until I can go home.
For the next few days I’m plagued with thoughts of not being good enough which has now triggered that familiar feeling of self hatred.
Then I find out what the issue was: it turns out I was reported for being inappropriate and a negligent carer. A carer?! I can only just about care for myself!
So – I’m trying to be politically correct here, because I don’t look like I have a difficulty/disability, because my persona portrays the impression of having high capacity, people thought that they could assume I was a carer just from how I looked. A carer who was drinking, being too wild and running out for a smoke. Inappropriate.
Just so you know, I am supported by Shared Lives. I’m not a carer. I’ve had a life long struggle with mental illnesses, self harm and lack of self worth.
I think the moral of this story is, don’t assume. Don’t judge people based on what you think you see. We don’t know what each other are facing. We don’t know what illnesses and monsters people are carrying inside of them. Let’s all just be nice to each other. Equality.