Paying to Live With a Disability

They say money doesn’t make you rich. They say money doesn’t buy happiness. They say money doesn’t grow on trees. I agree – partially. An astronomical bank balance and an oversized wallet can belong to someone who’s as miserable as sin. Money doesn’t create meaningful connections with anyone other than a banker and an accountant. And money can often sit more comfortably in a pocket when it’s been earnt. In a utopian world all these statements would be unequivocally true, but the trips I take to the bank with my nan illustrate a different side of the story. When Nan (who’s a few marbles short in a game of Kerplunk) sees a healthy figure pop up on the screen, she performs the I Got Money jig. It’s a moment of pure, unadulterated joy which NatWest have the pleasure of witnessing. Money equals lunch and lunch equals garlic pizza bread. Garlic pizza bread is: “The tastiest thing ever”. What more could a woman in her late-eighties want!

How we dance to the tune of I Got Money is a pivotal aspect of life. We don’t all take centre stage and waltz around our thirteen-bed mansions – many of us don’t want that. For most, it’s not about how much money we have, but about how we earn it. How we make a living has an impact on everything from self-esteem to self-worth. I’m not for a second saying people who don’t earn aren’t valued, nor am I saying they don’t have valid reasons for this. However, I believe there’s a positive correlation between productivity and authenticity.

This leads me onto how society enables people with disabilities to be productive and to reach their full potential. I can only speak from personal experience, so if you disagree, please tell me. As many of you may know, on 2nd October 2019, I was offered the position of Lincolnshire Young Voices Co-Chair. The role is right up my street: it’s a platform for positive change in the disabled community which is attained through our collective voice. Under normal circumstances, I would’ve been DBS-checked to ensure I wasn’t an axe-murderer and then I’d have been good to go, but living the best disabled life never takes a conventional route. So, in order for me to be productive; in order for me to carry out my job to the best of my ability, I needed Access to Work. The scheme, which is run by the DWP, enables people with a disability to receive transport, support and equipment. It essentially puts us on a level playing field with our colleagues.

Four months in, and I’m still waiting. The funding is almost there. The equipment is almost there. The support is yet to be located. The transport is waiting in my driveway for a driver. At some stage, I’ll fathom the inner workings of the DWP in the hope to alter the system. It should not be this hard for someone with a disability to start a job which is rightfully theirs. There should not be twenty-seven hoops for someone with a disability to jump through before they start that job. It should not be this emotionally draining for someone with a disability to start earning a living.

The tale doesn’t end there. Due to my financial change in circumstances, which comes as a result of self-employment and forthcoming employment, I’m obligated to pay a care contribution. My income is over the threshold and so I have to pay towards my care. To a certain extent, this doesn’t bother me. Would you expect a millionaire to be eligible for funding from a local authority or the NHS? I know I’m not on Oprah’s salary, but my income will be more than many others in my position, so I’m happy to do what needs to be done. The issue is this: the chances are, I’d have been better off staying unemployed. After I cut down a tree to print the evidence required for my financial assessment, I realised how easy it is to be economically inactive. And this is how the benefits system fails.

I’d love to give an easy solution to the problem by saying it’s better not to work, but that only causes exclusion. I know I’m not the only one with a desire to make a difference who is capable of earning. I also know that regardless of whether you work, you’re on benefits or you’re situated between the two, if your income is considered too high then you’re asked to pay a contribution. My point is, we have system upon system sending mixed messages to disabled people. It demands us to be upstanding members of an inclusive society, yet it makes our endeavours to achieve this almost impossible. How are we supposed to be productive, cultivate our self-worth and discover our authenticity when we have to pay to live with our disabilities?

The I Got Money jig is symbolic of opportunities: opportunities that people with disabilities fight for.

February 2, 2020 8:11 pm

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