Kevin’s disability means that he has limited mobility in his upper and lower limbs. While working as a carer, he witnessed how people treated him and those he cared for, based on assumptions.
I have a disability that gives me limited mobility of my upper and lower limbs. This is called an Arnold Chiari Malformation and a syringomyelia of the spine (a rare disorder in which a cyst forms within your spinal cord). I’ve had two brain operations, meningitis and this was followed by hydrocephalus (an excess of fluid on the brain), which meant I had to have a pump in my head to take away any excess fluid.
Before coming to Shaw Trust, I worked in health and social care as a carer, so I’ve had the chance to see both sides of the coin. Both as a carer and as a disabled person, I have heard people change their voices to a higher pitch but I don’t know why.
Maybe they think that I can hear them more clearly. I was in a supermarket and my brother was there. He spoke to the person I was caring for in a high pitched voice. I spoke to my brother later that day and he had not noticed he had done it. Perhaps someone can tell me why people do this!
There are many other things that people without a disability take for granted and believe that they must help the disabled person. One example is helping a disabled person to cross the road when that person does not need their help.
I was once waiting at a traffic light opposite a food bank and one of the women rushed across the road and took me by the arm. She proceeded to guide me across the road even though I didn’t need her help. She didn’t ask if I needed help or ask me if she could guide me across, she just basically pulled me across the road. I didn’t know what to say to her as it was a nice thing to do if I needed help – but asking me would have been nicer.
Whenever I go on an outing with my family or friends, I get asked every ten minutes or so if I am okay. I know that this is because they care for me and want to know if I am good. This can be frustrating, as being asked is fine, but to be asked a lot in a short space of time can get very annoying.