Five people share stories about extra costs – #100days100stories

For the past year, Scope has been campaigning to raise awareness of the extra costs disabled people face. These costs are different for everyone. So we’ve asked five disabled people and parents of disabled children to share their experiences.

The professional – Annabelle from Hampshire

Portrait of Annabelle smilingI have to buy shoes far more frequently than I would if I did not have cerebral palsy. My shoes wear out quickly because of the way I walk – the shoes I wear for work only last me two or three weeks. As a professional woman in my thirties, buying shoes should be a thrill for me. Instead it’s an expensive chore.

My job means I need to look smart, and this means that some things others see as treats are a necessity to me. For example, sometimes I struggle washing my own hair and need someone to help me, so I’ll have to go to the hairdresser. Someone who didn’t understand my situation might see me as indulgent. But really, I’m just putting myself on the same footing as everybody else.

The family – Liz, Dan and Ava from Essex

Liz, Dan and their two children

Our daughter, Ava, loves music therapy and it really helps her, but there is no provision where we live so we had to pay £40 a week to go private. When we buy specialist toys, we have to go to companies that charge four times as much.

Every time she needs a new wheelchair, we have to pay for the extras – a rain cover and sunshade can cost £500! We spend £50 a month on nappies. I have had to give up work to care for Ava, so Dan has to work seven days a week. He doesn’t get quality time with her any more.

The traveller – Sandy from ScotlandSandy smiling, on a boat

My husband and I took a cheap holiday advertised in a newspaper. We phoned the resort just to make sure there was a shower, because I can’t do baths. They said no, we would have to upgrade. The upgrade was an extra £80 or £90 – twice as much! We fought back and got a free upgrade, but a lot of people wouldn’t have the confidence.

On a ferry trip to France, we booked a disabled-friendly cabin. When we got there, we realised that if there was an emergency, I would need to navigate a flight of stairs to get to an emergency assembly point! We had to pay extra for a different cabin and it was less well-adapted – getting to the toilet was much more difficult.

The culture-lover – Hugh from Surrey

Hugh in a wheelchair using his feet to operate a computer

I’m into music, films, reading and studying – just normal life, really. I started my first degree when I was 51 and I now have a Masters in cult TV and film. To read a book, I need to have special software so I can read it on a computer screen, as I can’t turn pages and I have to pay someone to scan it in for me. The software itself is very expensive as well.

If I want to go to the cinema to see a film, I always have to buy two tickets – one for me and one for my carer. I’d love to do more socially, but I just don’t have the resources to do it.

The busy Londoner – Sulaiman from Redbridge

Sulamain in a wheelchair looking at the camera

I use a specialised 200kg power wheelchair and most underground stations in London aren’t accessible so I have to get a taxi. Going to a meeting or event in central London ends up costing me double or three times as much and taking up double the time.

I can go free on public transport with my Freedom Pass, but I have to pay for tickets for the two support workers I need with me. It’s at least an extra £100 to £200 each month.

It not only affects your social life and work prospects, it also has a huge psychological impact. I don’t want to sit at home watching Jeremy Kyle all day long. I want to go out, socialise, commute, go to work, pay taxes. I’m involved as a campaigner to ensure that everyone has this right in the near future.

Read the independent Extra Costs Commission’s new report on how to tackle extra costs.

We want to hear your stories about extra costs. Email stories@scope.org.uk.

One thought on “Five people share stories about extra costs – #100days100stories”

  1. I expect someone else has mentioned to Hugh that the CEA provide a card so that a carer can go free with you to the cinema. You need to reapply annually, providing a copy of your DLA letter.

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