Akunna's reality
I had polio as a child and it left me with mobility issues for the rest of my life. I wear calipers and used to use crutches to move around, but after years of this it damaged my shoulders, so now I cannot move around without a motorised wheelchair. When I was using crutches, I didn’t see myself as disabled, I could do stuff just slowly. It was society that was disabling.
People don’t understand what it is like to live with a disability that is progressive and fluctuates.
I have worked since I was 14. When I was in my mid-20's, I applied for Disability Living Allowance (DLA). Every time I applied, I have had to appeal - I’m not sure if it is a racial thing, when they saw my name, I have won every appeal.
I was on Employment and Support Allowance (ESA) and then got moved on to Universal Credit (UC). This is where it all went wrong for me. UC is badly drafted. Whoever makes the mistake, the claimant pays for it. This is wickedness. If the DWP gets it wrong and fails to act, the claimant is still punished.
My work is precarious so I have fluctuating pay every month. Once I was moved to UC I felt like they were trying to trap me. I felt panicky as UC made me feel unsure what would happen, I felt bullied by the system. People could be sanctioned for tiny errors. I often cannot speak due to my disability, but they said I had to take calls at a certain times. When you are on UC, they ask invasive questions like if you can wipe your own bottom. You can’t go on holiday (even if others pay), you can’t get birthday gifts. Where is the joy in life? It’s like they want you to curl up and die.
I couldn’t take the anxiety so I took myself off UC. I worry how I will manage if paid work doesn’t come through, but I felt happy when I terminated UC.
I still get Personal Independence Payments (PIP). I already pay a premium because of my disability. For example, I need to get taxis to get around London in my wheelchair. Ubers don’t take wheelchairs so I pay a premium for black cabs. The wheelchair provided by the NHS doesn’t fit in a cab so I had to pay for a new one myself. Getting batteries for my wheelchair costs a lot. I also need a machine to help me breathe at night and this drives my electric bills up.
The proposed changes to PIP really worried me as I won’t score 4 in all categories. Losing PIP would mean I can't go out and see friends and family. I won't be able to get in the shower easily, won't be able to clean my house. I have a cleaner as I cannot move about to clean. If something falls on the floor or spills, I have to wait for the cleaner to come. Sometimes I have maggots in the house as I can’t clean when spills happen.
The majority of disabled people need and want to live a life that is fulfilled, make money, socialise, get to places and interact with society. There are obstacles to this that are systemic. Disabled people are not involved in decisions so things don’t work for us.
As a black disabled woman, I have to fight to be heard. I have endometriosis and the doctors ignored me for ages. I am well educated and can fight for myself but it has still been hard. During covid I saw how disabled people - especially black disabled people – were treated with disdain. In the last few years, I have been called names when going down the high street and now I manage where and when I go out to stay safe. Racism underpins how I am treated - even if it is not overt.
Everyone is only an incident away from having a disability. Life changes. People forget compassion, they forget their humanity. It’s getting to the point where people are dying - they are dying silently and alone.