Why is it that non disabled people seem to think I’m a child. I have news for you folks – I’m not. I’m a well educated, 54 year old mother of two adult children,
And I am disabled, not stupid.
For many years I have had to deal with people who seem to think they need to crouch down in front of me in order to have a conversation. Just like you do with young children.
And people who seem to think I’m not capable of knowing my own mind and what I want – the infamous ‘Does she talk sugar’ brigade. Why not ask me? I can talk and, as a friend once said when a waitress asked him this question, I rarely stop talking.
This ‘treating me as a small child’ thing has come to a head recently as, due to a worsening of my condition, I am now in need of carers. Nice, kind ladies who come in every day and help me with washing and dressing and housework and providing me with meals.
This has been fine whilst, due to my condition, I have been restricted to my bed for the last few months. My ‘ladies’ have come in 3 times every day, two at a time, to get me washed in the morning, fed at lunchtime and ready for sleep at 6pm every evening. No problem really seeing as a nasty infection has meant that my bed has been in the living room for the pst seven months.
But things are changing. The infection is improving and, as a result, I will be able to go upstairs again soon in my lift and use my wheelchair every day. I will still need help with getting up and going to bed because I need a hoist but I will be able to re-enter the outside world. And this will still necessitate the need for carers to operate the hoist and doing the getting me dressed and undressed stuff. So I spoke to my Social Services provided carers about this so I could start thinking about timings and new shift patterns to accommodate my new-found freedom. I told them I would be quite happy to continue with them coming to get me up at around 9am on weekdays and 9.30am on Saturdays and Sundays. i then told them I would be able to get my own lunch so I would stop needing that visit. Then we came to my bed time visit and this is when the problems started.
My living room, where my bed is currently, is downstairs. My bedroom, where I hope to be returning soon, is upstairs. My TV is in the living room. My adult children, when they are in, sit in the living room to watch TV. As a family we sit in the living room to have our supper when my younger daughter gets home from work. As a result supper tends to happen at around 8- 9pm daily. I would therefore be looking at bedtime being somewhere between 10.30pm and 11pm. Not an unreasonable time for an adult…
How deluded was I. My carers informed me, very clearly, that NO carers would regularly work that late and that I would have to continue going to bed at 6pm. They then told me that occasionally, if I was lucky, this could be extended to being as late as 8.30pm but, in the main, bedtime would be at 6pm. I would not be able to watch TV in the evening. I would not be able to have supper with my family. I would not be able to have friends round for an evening watching Dvds. All this could, of course, continue downstairs as it would in most households but I would be upstairs in my bedroom, in bed, from 6pm. Like a small child.
I am an adult.
Adult social care should provide for adults who want to be treated like adults.
Care agencies should look for, and employ, people who are happy to undertake their caring responsibilities for adults who wish to be treated as adults. There are many people who are unemployed in this country, surely some of them would be happy to be employed as carers who can work later than 6pm. Social Services should be prepared to pay for care for people who want to be treated as adults and go to bed at adult times. I can’t be the only one.
I am a disabled adult aged 54, not naughty child aged 4. Don’t treat me like one. Provide me with the respect you would give to any other adult. Just because I am now more disabled than I was I have not entered a time machine and returned to my childhood. I am no different from the me I was before I became ill. I have not changed. Respect my adulthood, it has, after all, taken me 54 years to get here.