“I would like people to know that I’m a human being like them”
Lauraine is a client at one of our mental health and wellbeing services in Brighton & Hove.
She speaks candidly about the barriers she faces, not only physically, but socially and emotionally, as a disabled and chronically ill person navigating the world in a long horizontal wheelchair.
“The challenge people with disabilities face at the moment is acceptance. We need to be a bigger part of society to be more accepted.
I think it lies in early education. Children are being taught not to engage with disability. I’m a wheelchair user and I see how embarrassment gets the better of people when they see me. Young children look but never judge. They’re curious. But parents tell their children to “Sssshhh” or say “Sorry” to me. They need to know it’s okay for children to look and ask questions. We shouldn’t be embarrassed by disability. I’m just as normal as someone who doesn’t use a wheelchair, I just have to sit down. That’s how I see it, and I wish that’s how others saw it too.
My disability is severe. I’m not just disabled, I’m chronically ill. I don’t have much energy. I’m in an unusual wheelchair where my legs are horizontal rather than vertical because I have to sit back. It’s a long wheelchair and it makes accessibility tricky. It also makes acceptance from other people difficult as well. They always talk to my carer, instead of me.
It’s horrible. And I don’t understand it, ‘cos I always strike up a conversation with them to let them know I can talk intelligently. But they’ll still direct the questions to my carer even though I’m answering them. It’s dehumanising.
It used to really get to me, but I wouldn’t say anything. Now, I just get sick of it so I say something. They can be a bit embarrassed.
People make assumptions that because I’m in a wheelchair I mustn’t be competent, so they talk to an upright person who looks ‘normal’. It’s getting worse because I’m getting old. Now I’m going to be seen as an old lady in a wheelchair.
I tend not to go shopping. Some shops are worse than others, so I stick to certain ones where the staff are marvellous and treat me the same as other people.
People need to listen to disabled people to make their services better. I got Argos to train all their counter staff across the country in how to deal with disabled people after an unpleasant and very frustrating incident. I went straight to the CEO.
I had a traumatic experience at the breast clinic where I was ignored and the staff spoke to my carer. I went to the commissioner in charge of safety and care in hospitals. The lady who responded to my complaint was fantastic and said that as a result of my experience they were going to retrain staff in East Sussex, West Sussex, and Surrey.
A lot of disabled people feel they aren’t of the same value as able-bodied people. Because I am chronically ill, I’m frightened of being a nuisance. Sometimes, I have to cancel appointments and people can’t rely on me ‘cos I might have to phone and say I can’t come at the last minute. I’ve got so little energy that I can’t do things for other people, but I need that to feel that I’m worth something.
I go to a local Southdown service for craft. I’m a crafty person and I make greetings cards. I go because I like the people – the other clients and the staff.
The staff there have really made it work for me. I don’t always have a carer to take me and so I’ll come by taxi and the staff put my wheelchair together and push me in. They do all sorts of things that make it physically possible to attend the Hub. I wouldn’t be able to go otherwise.
I did find some people there didn’t talk to me because I couldn’t move around, but I understand now that it might be because they have anxiety. The day I decided not to go anymore, I had made a cake and cupcakes for Pride. That broke the ice and it gave people something to talk to me about. After that, people became more accepting and came up to me and talked to me. I realised then that I must have started looking a bit unfriendly because I felt hurt when people wouldn’t talk to me, and maybe that’s why it was also harder for people to approach me.
I would like people to know that I’m a human being like them. I sit down, but it doesn’t make me different to them.”
