“I want my son to know there’s nothing he can’t do” – #100days100stories

Guest post by Kelly from Harrogate. Kelly’s story made headlines when her 12-year-old son Joe, who has cerebral palsy, couldn’t go and see a film at his local cinema because there was no wheelchair access. Ironically, it was National Disability Access Day – and the film was The Theory of Everything, the biopic of Professor Stephen Hawking. Here she shares what happened next.Kelly with Joe sitting in his wheelchair in school uniform

Our local cinema is a listed building and they cannot adapt it to allow wheelchair access to all its screens – fair enough. But when I phoned them to ask if they could perhaps show the film on an accessible screen over the weekend, they said no.

I was so shocked and sad. I am a single mum and I have four other children, so it takes a lot of organising and planning to do anything at the best of times.

So I had a rant on Twitter, like you do these days, and the BBC picked it up. Suddenly my mobile phone was ringing all the time – the BBC Look North team wanted to speak with us, then the local radio stations and then Sky News! I couldn’t believe that all these people wanted to hear about what happened.

The journey I’ve been on

I think I have gone through every emotion possible since Joe was diagnosed at nine months old. I felt denial, anger and guilt. I didn’t want to face the fact that he was disabled.

But then when Joe was three, he started attending the nursery attached to a special school.

One day we were called to a meeting. We were put in a room, but Joe wasn’t there. Then the teacher came in and said, “Joe wanted to show you something”.

Then in came my little boy, wheeling himself along for the first time ever. I had always carried him before. Gosh, he was so proud, so pleased with himself!

I just started crying. The physiotherapist put her arms round me and said: “He needs to be in a chair. He needs to know that this is what he needs, and you have to help him.”

That day, for the first time ever, I used the word ‘disabled’. I saw that my boy would always have to face things I would never fully understand. But as his mother, I was going to make sure that he had access to everything that my other children had.

That’s the reason I decided to stand up and fight about the cinema. I felt I had to give my son a voice, and show him it’s okay to say: ‘I want what everyone else has, please’.

I want him to know that there’s nothing in this world you cannot do – you might just have to do it a bit differently.

Kelly and Joe at Paralympic stadium with the flame in the background
Visiting the Paralympics in 2012

Tackling the issue head-on

As a result of all this, I’m now in the process of setting up a website about accessibility in my area. It’s a review site for days out and attractions, and at the moment we’re concentrating on Leeds, Harrogate and York.

There’s nothing worse than getting in the car for a day out and then having issues with access, so we collect details about disabled access. It will also have a page of all the disabled-friendly clubs in the area.

Families also leave us reviews of places they have visited, so that people know how accessible it really is. Let’s face it – just because it has a ramp at the front door doesn’t mean it’s wheelchair-friendly!

We finally saw The Theory of Everything, and as we left the cinema Joe said:  “I can do whatever I want mum – look at Professor Hawking.” I was so proud.

Kelly shared her story as part of our 100 Days, 100 Stories project. If you’re a disabled person or a parent of a disabled child, email us at stories@scope.org.uk to share your story.

Our top 5 films of people’s stories

It’s National Storytelling Week 2015 and we’ve just launched 100 Stories in 100 Days.

To celebrate, we’re sharing our five favourite Scope films in which disabled people tell their stories.

So without further delay, here they are:

    • Fighting all my life – how mixed martial arts helped me conquer my impairment – Jack’s story


      At just 17-years-old, with a weaker right side and no use of his right hand, Jack competes in mixed martial arts (MMA) fighting with non-disabled men, who are often much older and bigger than him.

 

 

    • The best future for my son – Dionne and Jayden’s story


      Dionne first rang the Scope helpline in 2010 to find out about physiotherapy regimes for her son Jayden. Since then, she has been working with response worker, Vasu, to get information about respite services, equipment and support groups.

 

    • Six years leading Scope – Alice’s story


      Alice Maynard was Chair of Scope for six years and stepped down in October 2014 after two terms. In this film, she talks about the changes she’s seen during that time, and what she thinks the future will be like for disabled people.

 

  • Behind the scenes of Scope’s work in the community – Ian’s story


    Follow Ian Jones, a regional response worker, and find out about the vital information and support he gives to over 80 families living with disability every year.

Coming in 2015

We’ve got some really exciting new stories coming up on our YouTube channel in 2015. If you’d like to be the first to see our videos as they are released, then please subscribe to us on YouTube.

About 100 Stories in 100 days

Every day from now until the general election we’re publishing a story from a disabled person or a family with a disabled child. We’re encouraging parliamentary hopefuls to read just one story – so they’ll better understand disability if elected.

Find out more about 100 Stories in 100 Days

The financial strain of disability #100days100stories

39 year old Emily lives in Eastbourne with her husband and four children – Lucy, 16, William, 12, Oscar, six, and Reuben, who’s four. Both the younger boys have autism, and Emily has had Myalgic Encephalopathy (ME) for many years, which means her energy and movement have been limited. She is recovering now, and has recently returned to work, but she still uses a wheelchair for long distances. In this guest post as part of our 100 days, 100 stories campaign, Emily describes how her family is trying to meet the extra costs of disability.

Food

The boys have a lot of difficulties with food and there’s lots of wastage. If they get some bread or cake or a banana, they will eat part of a slice, throw it on the floor, get another, and throw that on the floor. They’re also very faddy – one day they want eggs on toast and the next day it’s oranges. Sometimes they won’t eat at all; another day one will eat dinner, but the other won’t.

Clothes

The boys often need particular materials and certain fabrics are a no-no, so we’ve wasted money on things they won’t wear at all. Oscar insists on wearing one sock at night; the other sock gets separated so I end up with a sock nightmare! Reuben loves playing outside in the garden, but will get very muddy, jumping in puddles and sitting down on wet surfaces that other children would probably stay away from at his age.

Washing

We get through a lot of washing powder with extra continence problems. Ozzy is only just out of nappies at six; Reuben still wears them 24 hours a day and he’s four. He has nappy leakages at night, and spills a lot of milk on the bed, so that’s extra washing. The other day Oscar put his hand down his pants and smeared poo in his bed. When Ozzy was in nappies, we would dress him in five layers of clothes to stop him smearing everywhere, but now that he’s potty trained he needs to go to the toilet himself at nights, so he goes to bed in pants and pajamas. It’s a difficult decision between teaching him independence and keeping things clean.

Learning

I’ve tried to get the boys interested in reading since they were babies, but it’s been a struggle. Ozzy’s just started showing an interest, but Reuben’s just not interested because of his speech and language delay – so books end up getting ripped up, partly in frustration and partly from excitement I think.

I have to think outside the box and use online games and reading apps. Both the boys are fixated with screens, so we try to use them productively. If we could afford an iPad with the right apps it could really help Reuben learn to communicate.

Toys and play

Emily's husband and four children on a park bench eating icecream
Emily’s husband and four children

They’re very destructive in their play and exploration, and get through toys like no one’s business. Reuben goes to his bedroom, pulls all the drawers out and empties all his toys on the floor. I think perhaps all toddlers are destructive, but the boys have been in this stage for five years. They also play with everyday items around the house – things from my desk, the kitchen, the bedroom and the bathroom. This isn’t only an extra expense on replacing the items, but also wear and tear on the house.

Supplements

It’s only because I’ve worked hard at trying out different combinations of supplements and pacing my rests throughout the day that I’ve managed to get to a place where I can return to work. I take D-Ribose energy supplement, which boosts energy and recovery. That’s the most expensive, at £18 per 250 ml. Without it, I wouldn’t be able to get out of bed. Then there’s Aloe Vera juice, vitamin D, evening primrose oil, among others. I easily spend £50 a month on the lot, possibly more. They all really make a difference.

Toiletries

I’m really sensitive to chemicals and had to change shampoos and bath stuff to dermatological and natural ingredient products, but it’s very expensive to trial and error those. The boys also get psoriasis and eczema so they need to have special toiletries. The consultant recommended having lavender oil in their bath to try and calm them at night, so I managed to source a big 100ml bottle for the same price as a 10ml. But all this takes time and research, and you’re not always successful finding a good deal.

Travel

To go shopping I hire a mobility scooter, which costs about £100 over the year. We’ve had to replace car seats because Reuben’s an ‘escapeologist’ who manages to get out of most five point harness car seats, and we’ve had to replace buggies over the years. Car parking can be expensive, especially in hospitals. When you’re transporting two autistic boys, public transport is not a valid choice because of the safety issues with the boys running off in a random direction.

Looking to the future

We use the boys’ DLA (disabled living allowance) to help with their care, so we have an extra pair of hands on the school run to keep them safe, and to help us keep on top of the washing, extra tidying and cleaning.

I’m happy to be back working, but the financial state we’d gotten into by me not being able to work was getting really bad, and we were getting heavily into debt. We sold our flat to pay off our debts, and moved into rented accommodation.

If I hadn’t recovered enough in order to be able to get a job, we’d be really struggling still. With both of us working, we can now cover all the high costs of living, and the extra expenses that come with our beautiful boys. We can’t take them to therapeutic groups or swimming in the evenings, as I don’t get home in time; but just like everyone else, we’re doing the best we can with what we’ve got.

Life costs more if you’re disabled. Read more #ExtraCosts stories