‘It’s really expensive to be a disabled person in 2017’
A new film by a Welsh university student looks at the everyday lives of disabled people. Ruth Mosalski went to find out more
THIS playwright, university student and the mum of a toddler - what do they all have in common? They’re all living with disabilities. Tom is a 27-year-old writer and playwright, Adam is a student with Asperger’s and Shahena’s son has a form of dwarfism.
All have their own daily routines, tasks and challenges and all are featured in a short film, created by a Cardiff student.
Roqib Monsur, 22, is a final year journalism student at the University of South Wales.
“I want to find out how someone with a disability lives their life, how it affects them, day to day and does it matter?”
The “This is Me” film features the stories of Tom Wentworth, Adam Morgan and Shahena Begum.
Tom’s day starts with a visit from a carer. Because he is working, he pays around £1,000 a year for that service.
“As a 28-year-old young man, I do have these extra things which come out of my income.”
“I can’t use public transport so I have to get taxis, which I have to pay for. Cardiff is a great city for that because it’s quite small but it’s still a costly business.”
Cuts to services are also affecting him.
“The world is in a really chaotic state. It’s really expensive to be a disabled person in 2017. The world can’t really afford disabled people.
“The financial implications on me, a relatively able person, are big and I know a lot of people who are really struggling.”
He says he believes it is getting harder to make ends meet if you have a disability.
“Budgets are getting tighter for everyone and as the global economy has struggled, so have disabled people.”
He uses shoes as an example. His splints mean he cannot buy high street shoes, and his allowance for specialist shoes has been halved to just two pairs.
“If your shoes break, you can get another but they have to be absolutely ripped to shreds.
“I have spent around £3,000 in the last year on shoes but I did that on my own. I can afford that as I’m middle class and I am in an extremely privileged situation but there will be a lot of families who are struggling to get shoes for their children.”
“I have constructed my whole life so that I am close to places to cut down on costs.
“I’ve really got to plan ahead and think things through. So doing things spontaneously can be quite difficult. But you get used to it.
“Day to day, I’ve sort of not made it a problem because you wouldn’t want to live like that frankly. You just live with it. You live with what you are giving. You adapt to survive. We are built to adapt to survive. I try and make it less of a problem. I mean life is complicated enough, so just get along living life really.”
Adam finds social interactions difficult.
“Especially when I was younger I had trouble knowing how to talk to people. If there were people I didn’t know I wouldn’t or couldn’t talk, so it was quite difficult growing up especially in school.
“It wasn’t until I was older I learnt to deal with it. Now at this point I’m a lot better off. I find it a lot easier to manage myself socially”.
For Adam, going to university was a huge step.
“University then threw me straight out there and helped me a lot with over coming it. There’s still stuff I struggle with but it is a lot less than when I first came to university.
“I’ve had few people telling me to get over it, when I had anxiety about being around people, being places, I’ve heard that a few times. A lot of people out there that don’t see it as a real thing or anything that matters because to them it is easy, going to a restaurant and going up to order food. For me it is a lot difficult than that.”
Inaam has Russell-Silver syndrome, a form of dwarfism which will affect his growth as he gets older.
His mum Shahena said: “Me and my husband, both have been supporting him, it’s never been one person doing more for him. Its always been both.
“With Inaam I guess, we can’t...we have to balance it out. You can’t expect one person to do more. It’s really, really, hard on one person because he’s so challenging. We’re just learning to manage it. I think finally after two years we’ve kind of found a balance of who can do what better. We haven’t been able to go out, we don’t go out. All we do is feed Inaam, feed ourselves, go to sleep.
“Our whole lives revolve around Inaam. He’s two years old but he’s on a liquid diet of a four to six month old.
“I don’t see him eating on his own because he still hasn’t gone over the baby stage yet.
“So it is going to take time but we’ve not known anything else, so we can’t really say that we know what it’s like having a normal child, and living a normal life. Because, we’ve only been giving this child.
“It’s not that I enjoy staying at home. I’d love to pick up my twoyear-old and go for a walk. I physically can’t do that with Inaam.
“As the consultants have said, there is no way Inaam would be at the stage he is without having such pushy parents so to say. We are pushy with him, but we have to be with his feeding.
“I don’t want anyone to see Inaam as being different or abnormal. Of course physically it’s kind of hard not to notice he’s different. But I want people to get to know Inaam for who Inaam is, not just think he’s different or I won’t approach him or I can’t talk to him.
“Inaam is the same as any other child, as he grows and as he comes into himself, I think he will be more caring, because of his differences. I’ve noticed children who are different are more caring towards other people. They’re more responsive towards other people and I say him growing into being that kind of person”.
All were asked if they agree with the use of the word “disability”.
Tom said: “I don’t mind the word disability personally. I’d rather it be used, despite it’s negative connotation. I’d rather it used than some of the other language that seems to float around.
“So, I don’t mind the word disability, I don’t have a problem with it, but I understand why some people do.”
Adam said: “I really don’t want people treating be differently that much, I don’t want to be patronised or anything. I don’t want people being like ‘Oh we won’t go here, because Adam might be anxious’.
“Because, I do see myself as like anyone else. I’ve just got a little difficulty with certain things. Like I have trouble ordering coffee or ordering food from a new restaurant, but that doesn’t mean I won’t do it. It does mean, maybe the first couple of times, I’d prefer if someone else did it for me or it’ll take me a while to work up the courage to do it.
“I see myself as the same as everyone else as well. I’m obviously okay talking about my Asperger’s and for people talking about it. But, if someone isn’t that should be respected”.
Shahena said: “People with disabilities, I’d say they tend to see us, the “normal” people as the ones who are different. For them, they have been born like that, they’re like that.
“For them, they’re probably thinking, who’s to say you’re normal, and we’re the abnormal ones.
“For them they are normal because that’s how they’ve been all their lives.”