Every disabled person knows having a disability comes with its challenges; accessing public transport, accessing shops and restaurants, receiving support in education, securing employment, making friendships and relationships plus much more.
For me, the most frustrating thing is relying on other people for assistance. I require 24 hour care which supports me with personal care, house keeping duties, admin support and support attending social events.
My two favourite things to do in the world is visiting friends and attending live music events. Without these activities I feel isolated, lonely and trapped. But to be able to enjoy these things, I need someone to accompany me. I cannot drive a car, I struggle to control my wheelchair independently in public places and need help with other tasks including taking my coat off, cutting up food and holding drinks.
However being able to enjoy these events has become more difficult due to the lack of carers willing to acompany me. Over the last 18 months, I’ve gone through numerous carers and several care companies. Some carers don’t have a driving license, some have no experience driving a manual vehicle and some just aren’t happy driving long distances or in cities. I understand some people can be nervous drivers or have not had much experience driving in unfamiliar locations. But I feel my life is being put on hold because nobody is available to take me. I feel embarrassed and letting friends down when I have to cancel an event all because I don’t have a carer willing to take me.
Personally, I feel I’m quite flexible with my carers. I give them breaks, time to themselves, free food and accommodation and plenty of time to rest. All I ask in return is they accompany me to social events. I’m not expecting them to do this everyday but on a fortnightly or monthly basis.
I do try and use trains when available but many journeys have several changes and may take longer than driving. Also if I’m attending an evening event, there is no guarantee I could get the last train home. Plus I have been given a motability vehicle so I can travel freely and not just to admire the vehicle in the driveway.
Moreover, many of my friends are also disabled, some with life-limiting conditions. Therefore I want to make everyday count and spend as much time with them as possible.
I have raised concerns with my current care company that the carer they have currently provided me is refusing to support me with social events even though I made it clear at my assessment I attend gigs and festivals. I’ve asked them to start searching for somebody who is willing to support me in all aspects of my life.
If you, or someone you know, would be interested in supporting me and have a keen interest in travelling and live music, please feel free to get in contact with me.
Have you got a disability and experienced similar issues with carers. I would love to hear your stories.
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