Tag Archives: story

“My life is pretty damn awkward” – find out what is making Kelly cringe

Kelly has shared her embarrassing festival tales, is on a mission to make the UK’s most accessible football club and even let us film her when she tied the knot last year!

Now, as part of End the Awkward 2016, Kelly is back to share even more stories that will make you cringe and want to #EndtheAwkward.

Have you got an awkward story to tell? Tell us your story today.

As a generally average British girl, my life is pretty damn awkward anyway so having a disability and using a wheelchair often makes it even more so. The hilarious thing is, it’s often not me that’s feeling awkward.

So many times throughout my life, I’ve been avoided, talked down to and just plain ignored because of my disability. I can make light of it now but it’s actually a really serious and sad issue.

At all kinds of places (bars, hotel, airports, restaurants) people just plain ignore me! It’s the worst! They will do anything from talk to the person with me, blankly stare at me as if I’m speaking a different language and other times just pretend that I’m not there! This is definitely the worst kind of awkward interaction and it can really effect your confidence as a wheelchair user.

It’s hard enough to keep the confident facade going as a young adult as it is, so when throwing a wheelchair into the mix, it gets harder.

Kelly, a young disabled woman in an electric wheelchair, smiles at the camera with her friend

Avoiding the awkward

I’m ashamed to say there have definitely been times where I’ve avoided situations or asked someone else to do something for me to avoid awkward interactions (such as reaching card machines in shops, signing room check-in keys when the counter is literally higher than your head).

I’ve realised, this is simply the worst thing I could do.

I’m the kind of person who likes to challenge myself daily, to the point of painful fear and regret. You’re talking to the girl who auditioned for The Apprentice with no business plan when she was 18! Sometimes I just love being uncomfortable. However, the kind of uncomfortable that avoidance brings is a kind of deja vu uncomfortable that on bad days you just don’t want to deal with.

The good, the bad and the awkward

Sometimes, when I’m out, people will just not talk to me. They will literally avoid talking to me to talk to anyone who is with me, whether it’s my mom, my husband or a friend. They will talk to them rather than me.

There have been times that I’ve been answering back and they’ve been sending their answers back to me via other people, like they are a spirit and I am using the person I am with as a vessel to communicate!

Now I know a lot of my disabled friends have experienced this and I think it’s one of the most common awkward and annoying moments that I experience.

But don’t get me wrong, using a wheelchair definitely also has it’s upsides!

A group of young disabled people in electric wheelchairs pose for the camera at a music festival. They are all wearing rain macs
Kelly and her group of friends at a music festival

As many of you know, I love festivals and I’ve been to most of them. I was recently at a music festival (I won’t say which as I don’t want anyone to get in trouble!) where myself and two others (both wheelchair users) literally just walked into the VIP area.

We weren’t asked if we had tickets or wristbands, we weren’t checked at all. So we spent most of the afternoon enjoying the hospitality that we hadn’t paid for. Thanks to the awkward security guard for not asking any questions!

As some of you may also know, I was an overly rebellious and not always well behaved teenager. At college myself and my friends were caught by the police doing something bad and teenager-like. The police proceeded to arrest all of my friends, except me, and took them to the station. At the time, this really annoyed me! Shouldn’t all police cars be able to transport electric wheelchairs? But now I look back on this and I guess it was a good thing as I got off scot-free!

A group of festival goers (some in electric wheelchairs) pose for the camera
A sunny selfie of Kelly and friends at a music festival

End the Awkward is returning and we want to change even more attitudes around disability.

Got a really awkward story? We’d love to hear about it! Has anyone ever tried to avoid you or acted totally awkwardly around you? Tell us your story today.

Don’t worry, the treadmill isn’t for me – #EndTheAwkward

Guest post by Emily Yates, a travel writer, disability awareness trainer and consultant – she’s currently working on accessibility in Rio de Janeiro ahead of the 2016 Olympics. Emily is sharing some of her awkward moments as part of our End the Awkward campaign.

My boyfriend is really into his mountaineering and is currently training for an ultra-marathon. He recently ordered a treadmill to help him on his way, and arranged for it to be delivered to the house during the day. Portrait of Emily, a young woman with pink hairHe was at work when the delivery man turned up and rang the bell, but I was home and opened the door to let the guy in.

When he saw me sat there in my wheelchair smiling at him, he almost dropped the treadmill and ran for the hills! He was so visibly shocked and worried he’d got the wrong house number – how could I, a girl with cerebral palsy, use this running machine?!

After apologising and assuring him this was the right house and my boyfriend had actually placed the order, we were able to giggle about it. And of course, I texted Rob straight after to tell him of my awkward, but hilarious, ten minutes

A magnet for awkwardness

For some reason, my disability and the fact I always have bright clothes and hair seem to reduce the need for people to give me personal space. Maybe I’m just a magnet for awkwardness!

Emily sitting in her wheelchair, a beach behind her
Emily on a trip to Australia

Guys seem to think it’s totally acceptable to come up to me in a bar and ask whether or not I can have sex. My response? Yeah, I can mate, but I won’t be having it with you!

I’ve been on planes where I’ve had to crawl down the length of the aisle to get to the toilet after being told that the plane’s in-flight wheelchair has been ‘forgotten’.Emily sitting in her wheelchair, smiling at the camera

I’ve let go of my wheelchair whilst transferring into my car, and watched it roll across the car park at ridiculous speed before smashing into someone else’s vehicle (oops!).

And the other day, I was in Starbucks and struggling to open a ketchup sachet for my sausage sandwich. After not succeeding with my hands, I put the sachet between my teeth and pulled. No luck. I must’ve been quite obviously struggling as a man came over to me, took it out of my mouth, battled with it himself then handed it to me, a victorious look on his face (and probably a reasonable amount of my spit on his fingers).

In one respect, this guy made my day with his problem solving, but really… Who does that?

So, tips to help us all be less awkward: If you want to get your leg over, try and build up the atmosphere just a little bit first. Don’t be surprised when the product you’re delivering to a house isn’t fit for a wheelchair user. And absolutely allow everyone to keep their ketchup to themselves.

We’ve partnered with Channel 4 to produce six short films on awkwardness and disability.

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

Fabienne’s Story

Guest post from Fabienne who is a mentor at Scope’s Our Generation project.

A few years ago, I made the brave decision to leave my job of many years as a classroom teacher. Without realising it, I had gradually developed a range of negative and self-destructive thoughts and feelings about different aspects of my work. It took time and effort to acknowledge the outcome of my decision. I was unable to see my situation clearly and I found myself engulfed in a storm of unhealthy emotions: anxiety, fear of the future, guilt, worthlessness, an overwhelming feeling of failure and my inability to find any good, positive achievements in my life.

I knew deep down that I had to try to be proactive, so I requested from my GP, and received some outside support, which showed me some positive ways to start moving forward. One of the professionals told me about the work that the Our Generation Project and suggested paying them a visit.

After talking to one of the coordinators, I decided to register with the service as mentee. I felt that this was an opportunity not to be missed, something I had not tried before, and something which fitted well with my aim of keeping an open mind.

Over the course of year, I received regular support from two different mentors. They both gave me a listening, understanding and empathetic ear. Every meeting, I was encouraged to talk freely and at my own pace, without judgement or pressure. I was encouraged to develop my own coping strategies and to acknowledge my on-going progress. I received support in identifying my short-term and long term-goals, as well as workable ideas for self-development and relaxation techniques, run by the WEA, and both courses played an important part in my progress. I was able to practice and apply a range of the techniques in my daily life.

As I write this, I have managed to continue to develop some private tuition and to rebuild my confidence in teaching. I am working as a church volunteer in the community café in the village where I live and have really enjoyed being involved in something entirely new while meeting new people and making new friends. And I am currently in the process of completing a mentoring/befriending training course for Scope’s new project called Silver Dreams – Our Generation.

I would like to be able to give something back to a wonderful service and I would like to express my grateful thanks for all the guidance and support I have received from my mentors and from the coordinators who have helped me to start believing in myself.

Our Generation is a free mentoring and befriending service that offers one-to-one support for disabled people and people with long-term health conditions over the age of 50.

My son tried to cook dinner and drive my car in middle of night!

They really take it out of you. But imagine if you were woken most nights because your child just can’t sleep. It’s a problem that many parents of disabled children talk to Scope about. Here, Helen from Peterborough describes her son’s nocturnal adventures – and how our Sleep Solutions programme is putting an end to their sleepless nights.

Sleepless nights.

My son is 10, almost 11, but he thinks he’s about 35!

Luke has Down’s syndrome. He’s full of beans and has no fear of danger.

Luke used to sleep well, but when he changed schools last September he missed his old friends and I think the change in his routine must have unsettled him. He has no problem getting to sleep, the problem is that he wakes up fully alert in the middle of the night and gets out of bed. This could happen four or five times a night. Once he’s awake, he gets bored.

That’s when the trouble starts

Once, he got up at 4am and tried to drive my car. I didn’t hear him open and shut the front door or get into the car. Luckily a neighbour noticed – he just happened to look out of his window and saw my car with all the lights on.

Another time, he almost set the house on fire. I woke up to hear a strange clicking noise, opened my bedroom door and saw Luke sitting on the landing. He had the fire lighter and he was transfixed, looking at the flame as he burnt the tassels at the end of a wool rug. As I carried it downstairs, the rug caught fire. I was in total shock.

That was the wake-up call for me. I realised I had to do something to help Luke sleep before he hurt himself or someone else.

Support from Scope

Sleep Solutions was such a great help. The beauty of the sleep team is that they really do care – you can just tell they do. They take time to get to know you and your child which helps them establish the specific sleep problem and how to treat it. You don’t get that level of support from a book; it’s the human contact that makes all the difference. They gave us a routine for bedtime, which is surprisingly difficult to achieve. Sometimes, it’s basic stuff that you already know but having support from Scope’s sleep practitioners makes it easier to put into place.

Our sleep practitioner came to our house and got to know us. She looked at Luke’s bedroom and how it’s laid out. We realised that Luke often gets cold in the night because his single duvet slips off, which wakes him up, so I brought him a queen size duvet and also got him some black out curtains.

Scope told me about foods which contain melatonin from a brain chemical called serotonin which can trigger sleep. I took this information and started doing some web research, there’s loads of information online. I now try to include more bananas, turkey, chicken, nuts, milk, honey, salmon and tuna in Luke’s diet. I also look out for foods which contain Tryptophan, such as cereals like porridge or anything that contains oats, which aids sleep. I don’t give Luke any coca products four hours before sleep, so if he does get a chocolate treat it’s as he gets home from school or mostly weekends.

The difference it’s made

Today, I spend a lot more time on Luke’s night routine. I didn’t always bath him at night but now I make sure I do, because it helps him relax and is a signal that it’s time to go to bed. Sometimes, Luke still wakes in the night but he usually goes back to sleep on his own. He knows if he gets out of bed and starts messing around, he won’t get his reward at the end of the week.

His school has noticed the difference too and his teachers are really pleased with his performance now. He’s been held back for the last couple of years but they say he can move into the next class soon.

Support services like Sleep Solutions are so important to parents like me. The Government is cutting so many services at the moment, it feels like parents of disabled children are being abandoned. That’s why it’s so important that Sleep Solutions carries on doing such great work.

Please make a donation to support more families like Luke and Helen get the support they need.

All I wanted was to go back to being ‘normal’

This blog entry is from one of our new mentors from Scope’s Our Generation project in Wakefield.

I am a 52-year-old woman originally from Glasgow. I moved to Wakefield six years ago with a new partner, following the breakdown of a relationship of 20 years. For the first three months we lived with relatives of my partner which I found extremely difficult. I had been suffering from depression, anxiety and OCD for a long time and I found living in someone else’s home a nightmare to deal with.

The situation took its toll – I was so desperate to have a place of my own that we declared ourselves homeless. Due to my medical difficulties I was classed as a priority and we were given a bungalow. All my belongings had been left behind in Glasgow so we moved in three days before Christmas with no furniture. I had also left my adult daughter behind in Glasgow which broke my heart and I found it hard to cope with the guilt of leaving her.

I hit rock bottom – my depression and anxiety got worse, I gained weight and hated myself. I felt I had nothing left to live for. It was at this point that I was put in touch with Scope and the mentoring service. At first I didn’t think it was for me as I had never needed support or help from anyone but I couldn’t cope on my own any longer, so I finally made arrangements for a Scope worker to visit me. I found her really compassionate and caring. She introduced me to a mentor who started to come to the house and eventually I found the courage to start going out. It was only small things like going out for a coffee or for a walk round the supermarket but it was a start.

All I wanted was to go back to being ‘normal’ – simple things like getting on a bus alone or going into a shop without having panic attacks. With the support of the service that is what I have managed to achieve. I still have times when I feel depressed and down but I now have friends who I know won’t and don’t judge me. Thanks to Scope I have some sort of life back and life doesn’t seem as bad as I once thought.

I have just finished the mentoring course with Scope and now hope to become a mentor to others. I just want to give someone the strength and courage to live their life as fully as they can. I am a different person thanks to the people at Scope and I hope I will make a huge difference to someone else’s life.

Our Generation is a free mentoring and befriending service that offers one-to-one support for disabled people and people with long-term health conditions over the age of 50.