All posts by sarahjdavison

‘You can walk, it’s a miracle!’ Umm, no I can’t. #EndtheAwkward

Lucy is an award-winning charity campaigner, blogger, and dog trainer. For our End the Awkward campaign, she describes the day she was told she could walk again… by a physiotherapist who failed to spot her wheelchair in the corner of a room.

I have Ehlers-Danlos syndrome. Instead of my collagen being like glue it’s like over-chewed chewing gum, or at worst wet tissue paper. It stretches, gets thinner and sometimes tears, but never resumes its normal shape.

As a result, my gut has failed, my bladder has failed and I can’t eat or drink anything at all. I’m attached to a pump 24 hours a day which pumps all my nutrition, fluid and medicines straight into a line in my heart.

In most cases, people with Ehlers-Danlos can lead fairly normal lives. I have a really severe form which has led to organ failure and life-limiting complications. Nobody knows why. It’s just how it is.

My life philosophy

I had health problems growing up but I became disabled and very poorly when I was 14. In months, I went from being healthy to completely wheelchair bound, and then a year later bed bound.

Lucy and her mum smiling at the camera. Lucy is holding a certificate stating she is now an ambassador for a children's palliative care network.
Lucy and her mum. Lucy is a youth ambassador for the International Children’s Palliative Care Network

I’m 21 now and my health is up and down. Sometimes I can get out and about, at other times I’m stuck in bed for up to a year at a time.

My philosophy is simple. You have to make the most of what you’ve got and not dwell on the things you haven’t, especially when your time is limited like mine is. To get by you also have to laugh, and find humour in even the most difficult situations.

Seriously, I can walk now?

Last year, I was in hospital recovering from a major hip operation. A physiotherapist breezed over and told me I’ll be walking again in no time. Hallelujah – a miracle!

I explained, patiently, that I haven’t walked for six years but she wasn’t listening. Apparently, I was going to make a full recovery. Five minutes went by before the penny dropped and she spotted my wheelchair. I watched her face turn as red as a beetroot. She must have felt seriously awkward, because that was the last time I saw her.

Molly, my assistance dog

Lucy coddles her dog Molly
Lucy and her ‘rock’, assistance dog, Molly

Molly is my assistance dog in training. She picks up things I have dropped, puts clothes in the washing machine, takes my jacket, trousers, shoes and socks off, gets my mobile, fetches my medicine pouch and lets people know if I need help or alerts them if I’m poorly.

When I’m out with Molly, people will say to me: ‘Is she pulling you along then?’ or ‘You don’t need to worry if you break down do you?’ I try to smile, but when it’s most people I encounter saying it, it gets old.

Joy rides

I use an electric wheelchair. For some reason, people love to lean on, or next to, my joystick, so I am always sure to switch my chair off unless they fancy going for an unexpected ride!

Molly has driven me a few times as she likes to lay her head next to the joystick. I have to be careful when people hug me too. When I do leave my wheelchair switched on, the look of horror on people’s faces is priceless – you’d think they had committed a crime.

Why is disability so awkward?

When you’re in a wheelchair, most people don’t talk to you or even look at you – except the ones who stare. But when I got Molly, people started talking to me. She became the perfect icebreaker! Now, rather than being “that girl in the wheelchair” I’m the girl with the amazing dog.

Lucy in her wheelchair outside, walking her assistance dog Molly
Lucy and Molly on a training walk.

Awkwardness comes from unfamiliarity. People are too scared to talk to me for fear of saying the wrong thing. So some cover their nerves with silly jokes and others just totally ignore me. When people are scared of saying the wrong thing to disabled people, they end up excluding us.

How to end the awkward

I wish people would treat disabled people like they would anyone else they meet. Our bodies may mobilise and/or communicate in a different way, but we’re still human beings with wants, needs, hopes, dreams, desires, hobbies, passions, outlooks and attitudes.

We’re as unique as the rest of you, and we all want to live the best life we can. I wish people knew how to talk to us, which of course, they literally do, but when they see a disabled person everything goes out the window.

I can guarantee that you can make a disabled person feel 100 per cent better if you walked up and talked to them about ‘normal’ things, rather than entering straight into deep, intrusive and personal questions.

I’m quite open. I don’t mind telling people about my disabilities. But it would be nice if one person just started a conversation with me for the sake of it. I’d love that.

Through her blog, and social media, Lucy shares her life with Ehlers-Danlos Syndrome and describes how her charity work is helping to change perceptions of disabled people.

Lucy is raising money for a custom-made electric wheelchair to help her regain some independence.

Have you got an awkward tale to tell? Share your story with us.

 

Yep, my brain’s not normal… I’m in Mensa – #EndTheAwkward

Sheena smiling at camera in the countryside
Sheena

A chance encounter with a bullying ex-boss, gave Sheena the opportunity to challenge his definition of ‘normal.’

Sheena, who has Asperger’s syndrome and fibromyalgia, shares her awkward moments in support of our End the Awkward campaign.

In the early 1990s I had a manager who I got on with in many ways but who would delight in telling me, in front of other staff, that I was ‘weird’, ‘abnormal’ and that my brain didn’t work like a ‘normal’ person’s.

This was before the Disability Discrimination Act and the Equality Act gave disabled people more power to challenge discrimination. I felt powerless to do anything about his behaviour.

After a few years, I was moved to another building within the same organisation so I no longer had to suffer his torments.

In 2004, I found out I had dyslexia. It was a revelation. Because I couldn’t spell, I would stumble when reading certain words, and mix up words when speaking. I thought I really wasn’t very intelligent, despite getting through university.

But the dyslexia diagnosis debunked that myth. It gave me the courage to apply for membership to a certain well known organisation for people with high IQs. I was accepted and so was my son.

Revenge – a dish best served cold

Fast forward to the summer of 2006 and after leaving work one evening, I bumped into my ex-manager, the one who said I was ‘abnormal.’

Now they do say revenge is a dish best served cold and I’d waited a long time for this opportunity, so I called out to him in greeting and after exchanging pleasantries, the conversation went like this:

Me (as if an afterthought): “Oh, by the way, you’ve not heard which society my son and I were invited to join… well, actually we were ‘cordially invited’ to join, have you?”

Him (warily): “No…. which society?”

Me: Mensa.

Him (with a rictus smile on his face): “Congratulations.”

Me (playfully punching him on his arm, my voice bright and breezy): “You see, you were right all those years ago – my brain really doesn’t work like a ‘normal’ person’s.

And with that I walked away, floating on air, without a backward glance.

“Can you pass me that, please?”

I was in a sports shop and needed something from a top rail that I couldn’t reach from my wheelchair. The first member of staff who happened by was the store manager. I asked him if he could pass it to me: he said, “Of course, but where is your carer?” I replied: “They do let us out on our own sometimes you know!”

“Poor you”

I’d reverse parked into the designated spot on a bus. The elderly lady sitting opposite me said in a voice loud enough to be heard by the entire length of the bus, “poor you, fancy being in a wheelchair at your age.” The man sitting next to her, her son I assume, looked mortified. I responded in an equally loud voice: “Not at all, I have the disability anyway; having the chair has given me back my freedom. Without it, I’d be housebound.”

She then apologised and said she hadn’t thought about it like that. Incidentally the entire bus had looked shocked at what she said, and I got nods of approval and smiles. I didn’t take it to heart, she said it without thinking and there was a compliment in there somewhere – I was over 40 at the time and hardly a whipper-snapper!

Magic moments

It’s important to mention positive moments as well as awkward ones. I’d like to share a couple with you here.

At Christmas, I used to decorate my wheelchair with tinsel round the spokes and lights around the arms and side panels.

Waiting at the bus stop one evening in the dark, I heard a man’s voice behind me – he was talking to a child. “Look at all the pretty tinsel. Can you see it, isn’t it pretty? And look at the lights around the arms.” I started to turn them on and off to make them flash. “Look they’re flashing now, aren’t they pretty?”

I didn’t say anything, but did turn round and grin at the man who smiled back. It was wonderful that he had taken time out to show my decorated chair to his son. Hopefully with parenting like that, his son will grow up to be totally accepting of disability.

On another occasion, I wheeled past the entrance to a long drive way that had a big arch at the end. As I was going past, a teenage girl dressed as a goth was coming down the drive through the arch and so saw my chair side-on, “Wow that’s one cool chair,” she said. I grinned and thanked her.

Do you have an awkward story to share? Submit your awkward stories, and we’ll publish our favourites on our blog and social media.

Find out more about how Scope is ending the awkward this summer.

Our kiss caused a car crash #EndTheAwkward

A kiss, a snog, a smooch, a smacker: whatever you call it, kissing really does make the world go round. But if you’re disabled, kissing can be seriously awkward.  

We talked to Marie about what happens when she puckers up in public with her husband Dan. Marie’s story is shared as part of Scope’s End the Awkward campaign

Marie and Dan smiling at the camera on their wedding day
Marie and Dan on their wedding day

So here’s the scene. Dan and I had just started dating. It was midnight and we were on the way home from the pub, holding hands. Dan’s into astronomy so we stopped to look at the stars. What could be more romantic on a beautiful evening? A kiss seemed like the natural thing to do. After a moment, I became aware that a police car was driving past very slowly.

The officer was staring out of the window – eyes on sticks – like we were committing some kind of crime. He was concentrating so hard on us that he ended up mounting the pavement and crashing into a street sign. We couldn’t believe it! A few seconds later we heard the wail of the sirens and he sped off, clearly embarrassed.

We have to laugh, we really do

We still laugh about that incident now. We have to laugh – if we took these things too seriously it could start to mess with our heads. I can’t tell you the number of times people have bumped into lampposts or tripped over on the street because they are too busy staring at me. I can only assume the stares are because they are weirded out by disabled people.

There’s this assumption that we should all be lumped together in some big institution and not let out in public. So when they see us, they can’t quite believe their eyes that a guy who isn’t disabled could have fallen in love with me.

Marie pushes her baby's pushchair along using her wheelchair and Dan walks alongside
A day out in the country with their baby, Mark

A couple of months ago, Dan and I were somewhere, I can’t remember where. We were minding our own business, when we overheard a lady in her 50s talking to her friend about us. She said, “That just isn’t right, she’s the size of a child”. It hit us quite hard, Dan especially. Being seen as a paedophile simply because you’re holding hands with your wife… well, it’s awful isn’t it?

We often hear people making noises when we’re affectionate, like “ugh, what are they doing?” It should be fairly obvious, right? People don’t blink an eyelid if they see any other couple kissing in the street but because I’m in a wheelchair and Dan’s not, we become an immediate target.

If Dan and I aren’t being affectionate, it’s a different story. Trying to convince people he’s my husband takes some doing. One time, a hospital consultant asked me if Dan was my dad! When I said no, she presumed he was my brother, then my uncle, and finally my carer. I let her go on and on before she petered out. It’s that absolute assumption that because I’m disabled I couldn’t possibly have a love interest.

Marie and Dan sit on their sofa, cuddling baby Mark
Family time at home

It is an interesting British prudishness, I think. On the continent no-one seems to give it a second thought. On a trip to Holland, we booked a disabled hotel room and got a complimentary bottle of wine and chocolates left on the bed. In the UK, we usually get two single beds in a disabled room, or a single bed and a pull-out bed for the ‘carer’.

If you’re reading this on International Kissing Day, I hope you get to kiss someone you love today. I’ll definitely be kissing my hubby. And I won’t care if people look because I’m in love and I’m happy.

Read more awkward storiesDo you have an awkward story to share? Submit your awkward stories, and we’ll publish our favourites on our blog and social media. 

Find out more about how Scope is ending the awkward this summer.

Zimmer frames are the invention of the devil! – #100days100stories

Fear of falling, social invisibility and Zimmer frames. Valerie Lang, 75, discusses the realities of being older and disabled. She shares her story as part of Scope’s 100 days, 100 stories campaign

A portrait of Valerie Lang, 75, smiling.

I was diagnosed with cerebral palsy as a baby and started to walk unaided when I was six. My walking was inelegant but functional. Unlike many of my class mates, I was spared the horror of callipers. The children who wore them were so terrified of falling over in them that few, if any, learned to walk at school.

As a child, I was fearless. When I did fall, I was small enough to not do any serious damage. I would scramble to my feet and be up again in seconds.

I loved the freedom that walking gave me. I still do.

Help when I needed it

As a young adult, I studied and worked in London. If I fell over in the street, people would always stop and help me up. I’ve fallen in the middle of busy roads, landed in a heap at the top of a tube escalator, and been thrown from the back of route master buses. On each occasion, someone was always there to ask if I was OK.

Today, as an older disabled woman, I have become totally invisible. On the street, people ignore me, walk in front of me… some nearly walk into me, but fortunately they don’t because my mobility scooter would hurt them.

I’ve been on my hands and knees on the pavement clearing up after my dog and people will just walk past. They don’t stop to think why a grey haired old woman is kneeling on the footpath. That didn’t happen 30 years ago.

The bubble society

We live in a ‘bubble society’. So many people on the streets today are on their mobile phones, or in a rush to be somewhere else. It is as if we are all hermetically sealed into our own private little plastic bubble. We don’t have the time or space to think about the people around us.

I also wonder whether people are afraid of doing the wrong thing, and perhaps getting sued. Or it could just be that health and safety has won out and that people are no longer willing to take a risk.
Whatever the reason, it leaves me even more reluctant to walk anywhere unaided.

Fear of falling

As I’ve got older, I’ve learned that confidence matters far more than physical ability. I broke my ankle some years ago, just falling sideways from my own height. That accident shattered my confidence. If I do fall now, I can’t get up by myself. Today, when I leave the house, I’m all too aware of the potential dangers.

Unfortunately confidence cannot be summoned up at will. I have stood at the side of my car, looking at the six foot gap to my garden hand rail, and muttering to myself ‘don’t be an idiot,’ but I can’t take the first step. The fear would cause me to fall.

The art of walking

My mum always believed that if I only concentrated totally on how I was walking, I could learn to walk perfectly. I never did because I am unable to give full attention on placing my feet carefully for more than a few paces. I am much more interested in what I am about to do.

I use a trolley to help me balance and get around when I’m walking. I think that zimmer frames are the invention of the devil. To shackle old people to such clumsy objects is cruel. Turning 90 degrees requires one to pick the wretched thing up and move it round a bit, at least eight times. It is enough to put anyone off trying to walk. As with wheelchairs, anyone dispensing them should be made to use one first, for at least a week.

A step backwards?

I was lucky to be young in the 60s. In spite of the equalities legislation that has come in since, I was walking – albeit unsteadily – in a narrow gap in history when the few disabled people who were out and about, found society to be less judgemental than it may have been through history, and sadly seems to be now.

Find out more about 100 days, 100 stories, and read the rest of the stories so far.

Why did Valerie campaign to change the name of The Spastics Society to Scope?

There was no disabled loo so I had to use a disposable barbecue! #EndTheAwkward #ThrowbackThursday

Personal questions, portaloos, and the dreaded ‘platform’: Kelly, 26, and her husband Jarath discuss the trials and tribulations of music festivals when one of you is disabled.

This week Kelly showed us how awkward it is getting high five’s from drunk people as part of Scope’s End the Awkward campaign, so we’re doing a #ThrowbackThursday to her awkward festival moments!

Kelly: I’ve got spinal muscular atrophy type 3. It’s a muscle wastage disorder. I always get ‘why are you in a wheelchair?’ from strangers. It’s annoying because it’s the most basic question you can ask. A lot of people assume I’ve had an accident. Because I’m confident and outgoing, they can’t believe that this is a natural thing – that I’ve always used a wheelchair.

Jarath and Kelly drinking tea at a music festivalJarath: At festivals, people have had a drink so they think it’s OK to ask personal questions – and we get a lot of personal questions. I tend to get creative: I told one bloke that Kelly fell out of a plane and someone else that she was run over by a combine harvester!

Kelly: One of the most annoying things is when people come over and tell me how much respect they have for me… simply because I’m at a festival. It’s not like I’m doing a parachute jump. I’m just having a life!

Dancing

Jarath: At Global, we were backstage dancing and more people were watching us dance than were watching the actual gig. They kept tapping Kelly and giving her high fives.

Kelly: People often try to dance with me and push Jarath out of the way, pretty much hitting him in the face with fags and beer bottles, to try and get to me. I just think ‘what are you doing? Have you got no respect?’

A selfie of Jarath and Kelly at a music festival

Jarath: People gravitate towards Kelly and don’t realise I’m with her. They think I’m her mate or carer – never her fiancé. At one festival, I’d helped Kelly up and we were having a dance. People kept telling me to put her down. I was like ‘look this is my missus, leave us alone!’

Kelly: It’s not all bad though. At Reading, we had this big pink duffle bag on the back of my chair and filled it with beer, gin, crisps and sweets. Contraband basically! We sailed past the security guards while other people were getting their bags checked.

The disabled viewing platform

Kelly: The platform is a stage at the back of a gig for disabled people. The idea is that you can see over the crowd. It’s really far back from all the action and there’s never any atmosphere. It’s rubbish.

Jarath: It’s also heavily policed by security guards – you feel like you’re being constantly watched. One time, we got caught with a beer on the platform and got kicked off. Seriously, how many people are having a cheeky beer at a festival but because we’re the ones on the platform, we got spotted.

Kelly: We moan about disabled facilities but at least most festivals try. There was nothing at Global when we went – no charging points, no platform, nothing. I complained to the organisers and ended up blagging us a place in the VIP section.
We asked if we could put our tent next to the guy doing airbrush tattoos because we knew he would have power. I ended up charging my electric wheelchair there every day. When you’re disabled, you have to be creative and find ways to make festivals work for you.

Toilets – or lack of them

Jarath: Once, Kelly got banned from using the disabled toilets at a festival because she couldn’t ‘prove’ she was disabled – apparently she didn’t have the right wristband!

Kelly: I couldn’t use the normal portaloos because of the steps up to them. I ended up having to use a disposable barbecue! We joke about it now – we joke a lot – but it ruined the festival for me.

Jarath: At another festival, we paid to use the VIP area but there were no disabled toilets. They obviously thought you don’t get disabled VIPs! Kelly kicked up a fuss and the best they could offer us was one free drink for the inconvenience. So she told the bar staff we were entitled to free drinks all day. Result!

Kelly: I kicked up such a fuss they ended up using a crane to lift a disabled portaloo into the VIP area. Suddenly we heard the beep beep beep of the crane reversing and looked up to see a disabled portaloo dangling above us. I don’t think the festival organisers will make that mistake again!

Read more awkward stories. If you’ve had a similar experience we would love to know about it! Submit your awkward stories, and we’ll publish our favourites on our blog and social media

We’re all human, we’re all normal, but different. – #100days100stories

Christina has a rare condition which means she faints often. Finding work was a struggle – Christina saw people’s faces change as soon as she mentioned her condition. Scope helped Christina find a job through our Work Choice programme. Now she is a receptionist at a busy hotel and loves every minute of it.

Here, Christina shares her story as part of our 100 days, 100 stories project.

Christina-head-and-sholuders-half-size
Head and shoulders portrait of Christina, smiling at the camera

I have Vasovagal Syncope. I faint when I get too hot and when I stand on my feet too long. I can sit down for ages but I have to move around. I’m not bothered about talking about my condition. Some people can be rude but I don’t care.

I left school for a hairdressing apprenticeship but I got far too hot in the salon and I passed out a lot. I realised I would never be able to work as a hairdresser because of the safety implications. Before that I was a waitress. When I was waitressing it was difficult because I passed out a few times and broke a few things.

Dealing with people’s prejudices

It’s hard for young people to find a job. There are not many jobs around here anyway. Then, even when I do get an interview, I have to explain my impairment and deal with people’s prejudices. I didn’t say anything on my CV but when I told employers in interviews I could see their faces change. They were gob smacked. I just thought, right, that’s it then, goodbye.

I went into a little shop and started talking to one guy and told him I pass out if I stand too long, so could I have a chair. He said: ‘I can’t employ people like you.’ All I asked for was a chair. He didn’t even give me a chance.

I told the job centre about my condition and they contacted Scope. I was on Scope’s Work Choice programme for about three or four weeks. I got the interview here (at the White House Hotel) and sat down with Paul the hotel owner. Lynne from Scope went through the interview with me beforehand but I did the interview on my own. I was taken on as a permanent member of staff, interview on Saturday, taken on, on a Monday.

Supportive staff make such a difference

I used to be really shy over the phone. Now I’m always on it. I handle complaints on my own and pass them on to Paul if I need to. I‘ve learned how to work a bar, I’ve worked in the kitchen. I’ve found the people really supportive. When I fainted they had someone with me straight away. I got treated all day with cakes and sweets!

I’ve got a lot of responsibility behind the reception. Everyone relies on me. I’m a people person. I’m a good communicator and I have a bubbly personality. I like the responsibility of doing something important.

I’m going to start a hospitality NVQ soon. I’m looking forward to doing that. It will look good on my CV. But I’d like to stay here as long as possible. I enjoy getting up for work. On my days off it kills me. I don’t know what to do with myself!

An opportunity to prove myself

I genuinely don’t think I would have got a job without Scope. All I needed was a window, an opportunity to prove I was more than my condition. I knew the support was there if I needed it. Scope has helped with my confidence. They work with me to understand there’s no problem with me finding a job – I just need to find the right employer.

I would say to future employers that we’re all human, we’re all normal, but different. Everyone has their strengths and weaknesses and nobody should discriminate.

Find out more about 100 days, 100 stories, and read the rest of the stories so far.  

I never want another parent to feel how I felt which was rock bottom – #100days100stories

Tracy’s son Reigan, 13, has a range of conditions including autism, ADHD and Tourette’s syndrome. Getting the right support for him has been difficult, leaving Tracy isolated and depressed. Here, she explains how Scope’s befriending service helped her turn their lives around.

Tracy shares her story as part of Scope’s 100 days, 100 stories campaign.

I always knew being a single parent was going to be hard, but when my son was born he was a much harder child than I had imagined.

Tracy and Reigan smiling at the camera

He would sleep just fours a night. He was hyperactive; you couldn’t reason with him, you couldn’t get through to him. He lived in his own little bubble.

A diagnosis – now what?

His first diagnosis was actually a relief: I wasn’t a bad mother, I didn’t have this naughty child – there was something wrong. But I had no support whatsoever. I was told ‘your child has ADHD; here’s a leaflet’ and that was it. I didn’t know where to go or what to do.

I was suffering from depression and I felt isolated from other parents in Reigan’s school because of his extreme behaviour and kick offs. On one occasion he threw a chair so they moved all the other children out of the classroom for their safety.

Feeling isolated

Then a parent started a petition to have my child removed from school; it said that children like my son shouldn’t be in class with ‘normal children’. It was heartbreaking because not only was I being isolated, but my son was being isolated too.

Another time, all the children in Reigan’s class were invited to a birthday party and my son was the only who didn’t get an invite. What can you say when your child asks ‘why haven’t I been invited when everyone else has?’ It is horrible, really horrible.

Support when I needed it most

I heard about Scope from another parent. I went to a meeting and, in the two hours I was there, I received more support than I had in the previous six months. I was also referred to Scope’s befriending service, Face to Face.

It was such a relief to talk to someone who knew what I was going through, another mum of a disabled child. My befriender put me in touch with loads of organisations that could help us. Having her there to listen to my concerns gave me a level of strength I hadn’t had before.

I decided to move Reigan to a new school. Through my befriender, I got in touch with the Autism Team, a local authority service. They came in and explained to his teachers what autism is and why Reigan sometimes behaves differently.

Support for Reigan

The school put strategies in place to help. For example, if they saw Reigan getting agitated they would let him go to the playground on his own to calm down. It made a difference to Reigan’s behaviour almost immediately.

I had a befriender for just three months but I can’t express what a massive change it made to my life. It was the kick start for me getting everything back on track: I had the power to shape what was happening in my child’s life.

Making friends

Another great thing is the social life! We had gone from being socially isolated to having lots of friends. Through Face to Face, I met lots of parents with disabled kids. They didn’t blink an eyelid if Reigan started kicking off in the street. Nobody judged us or blamed us. They accepted us and that felt amazing.

I never want another parent to feel how I felt which was rock bottom. That’s why I became a Scope befriender. It is lovely to go along on a journey with somebody and see them come out the other side.

I’m so proud of Reigan

When Reigan was at his first primary school, the head teacher said he had no future. Now he is 13 and thriving at a mainstream secondary school. He’s top of his class for science and maths. He’s got friends and he’s very independent.

I truly believe that without Face to Face and the support we received from other organisations as a result, we would be in a very different place right now. Reigan just needed the right support to unlock his potential. I’m so proud of him.

Find out more about our 100 days, 100 stories campaign, and read the rest of our stories so far

The system’s not about people, it’s about money – #100days100stories

When Kenneth moved into a care home, he imagined gaining independence and the chance to learn new skills. What he got was a very different situation. Kenneth shares his story as part of our 100 days, 100 stories campaign.

Kenneth wearing a baseball cap smiling at the cameraI left home when I was 19. Like anyone else, I wanted independence and my own space. I wanted to choose what time to get up in the morning, what to have for lunch – simple stuff like that.

I moved into a bungalow with three other young disabled people. We had staff on site 24 hours a day to support us. I thought it would be great, I really did. My dream was to make friends and have a social life. Maybe go on holiday with my new housemates.

After a few weeks, I realised something didn’t feel right. For a start, everyone was in bed by 8.30pm. Why would you go to bed so early every night? It turned out my new housemates had no choice – they were being ‘put’ to bed early, even if they didn’t want to go.

Nobody was listening

I wasn’t getting the support I needed either. I wanted to cook my own dinners and to get out more in my car, but that wasn’t happening. I felt powerless because nobody was listening to me.

The days were long. I work so I could get out of the house but the others spent a lot of time watching TV. I remember coming home to find one of my friends, a girl who uses a wheelchair, sitting at the kitchen table with nothing to do. She’d just been left there on her own. Another time I came home to find two of my housemates with their wheelchairs facing the wall. I don’t know how long they had been like that – hours maybe.

A modern day institution?

When people think about institutions, they imagine these big old buildings with lots of residents sitting around doing nothing. But we were living in a brand new, purpose built bungalow and it was just as bad. It’s not how it looks on the outside; it’s how it’s run on the inside that matters.

Despite my mum and social worker getting involved, nothing changed at that place and I moved out. Now I live in another bungalow with 24-hour support. It’s not perfect but it’s a lot better.

In the future, I’d like to live on my own and have a personalised budget so I can choose the care I need. I’d like live-in support workers so I can do what I want, when I want. Personalised budgets are available where I live but disabled people are still getting stuck in homes because it’s the cheaper option.

Less choice over our lives

The system is so wrong. It’s not about people – it’s about money. Our social care and benefits have been slashed which means young people like me have little choice over our lives. Through my job at Change.org, I met Norman Lamb MP, the Minister of State for Care and Support. As I told him about my experiences, I started crying. I couldn’t help it. I hope what I told him has got through. Something has to change.

Find out how you can get involved in our 100 days, 100 stories campaign and read the rest of our stories so far. 

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.

World Down Syndrome Day – Meet Sarah and Philip

Sarah is mum to Philip and lives in Chorley, Lancashire with her husband and their other son Patrick. Philip is a typical mischievous four-year-old; he loves pirates and cars, and is fascinated by animals.

When Phillp was diagnosed with Down Syndrome, Sarah felt isolated and helpless. Although her family and friends were very supportive, she felt unable to return to work, and her self-esteem suffered as a result.

Face 2 Face parent befriending

Patrick, Philip and SarahSarah discovered Scope’s Face 2 Face Befriender scheme when Phillip was a year old. It’s a network of parents with disabled children who support each other through their common experiences. She found that it gave her a safe space to talk about how she really felt. “That was one of the differences that it really made – they were prepared to listen to my darkest fears.”

As her confidence increased, Sarah attended courses on speech therapy and signing, developing skills that she could use to assist her son. Without these and the support from Face 2 Face, Sarah believes that Philip wouldn’t have been able to start mainstream school in September.

Later, Sarah trained to become a befriender herself, passing on what she had learned to new parents so they could “wear the many hats that the parent of a disabled child must wear: physio, speech therapist, playmate and educator” in order to support their child.

A future full of possibilities

Sarah and Philip are now looking forward to a future full of possibilities, thanks to the support of people like you. She told us, “I’m so hopeful for what Philip will achieve now. I know he is going to contribute to the world around him – and I can’t wait to watch!”

Thanks to your support, we’re able to recruit and train more befrienders who can then support many more families with disabled children, meaning that they too can have a future full of possibilities. Thank you.