Tag Archives: Disabled

“The best way to challenge people’s attitudes by is getting out and doing things” – Gary Clarke

Britain’s Disabled Strongman competition returns this year and promises to be bigger and better than its successful launch in 2015. In this guest blog, organiser and strongman competitor Gary Clarke, who has cerebral palsy and is a support worker, talks about changing attitudes through action.

It’s a great year for disability sport. We’ve had the Invictus Games and the Rio Paralympics are later this summer. In the middle is Britain’s Disabled Strongman competition this Saturday (28 May).

In 2015, I fulfilled a long-time ambition of mine to set up a disabled strongman competition in the UK.  I’ve wanted to organise an event like this since taking part in my first competition back in 2011.

It’s a killer event that culminates with the atlas stone – lifting weights of up to 90kg between oil drums – which is a huge demonstration of strength and courage. I love that it all came from my determination to bring the games to the UK. That makes me very proud.

Disabled strongman preparing to lift the atlas stone
Competitor preparing to lift Atlas stone

Spirit of the Paralympics

I always look forward to watching the Paralympics. The strongman competition is very fresh and raw right now, but I think it’s on par with the Paralympics. The determination these guys have and the willpower to win – it’s the same spirit as the Paralympians. They’re doing it for the sheer enjoyment and thrill of winning.

Setting up the strongman competition is the best thing I’ve ever done to change attitudes and get people to think positively about disability.

People are going to take a step back and think wow; this guy is pulling a four tonne truck and lifting an atlas stone. How many people would think disabled people would be capable of doing that? The best way to challenge people attitudes is by getting out and doing things.

There are no limits, no excuses

I think some disabled people end up believing they can’t do things because that’s what they’ve been told. This competition proves that disabled people can do these very physical challenges and that events can be adapted.

The more people who tell me I can’t do something, the more determined I am to do it. Bringing disabled strongman to the UK was one of those things and I feel really privileged to have done it.

My inspiration is Arnar Már Jónsson, who started the disabled strongman movement in Iceland, where it has been running for 15 years. He was a pioneer and has made all subsequent events possible.

For this year’s competition on Saturday, we have double the number of competitors with 21 disabled athletes taking part in six events, and we’re expecting hundreds of spectators.  Last year we only had a seated class to include wheelchair users. We’ve added a standing class so that people with different impairments can compete on a more level playing field. We’re also lucky to be holding the event at the Strongman Sanctuary in Kent, where the whole team has been hugely supportive.

  • Britain’s Disabled Strongman competition is taking place at the Strongman Sanctuary in Kent on Saturday (23 May) from 10.30. Visit the event Facebook page for more information.

 

Inclusive dance at Beaumont College

Sarah has worked at Scope’s Beaumont College since 2007 and was originally employed as Dance Artist in Residence. She was blown away by the students, their ability and potential, so she studied to become a tutor and is now a Pathway Coordinator for Independent Lifestyles and Vocational Skills, with a focus on creative arts.

She teaches and makes sure the students are maximising their opportunity at Beaumont as well as having plans for when they graduate.

Part of my challenge here in Lancaster is to develop more opportunities for young people with learning and physical disabilities within the arts. I do this by developing links with arts organisations, which is how I became involved with The Big Dance.

Here at Beaumont, we’ve taken part in The Big Dance since 2012. A group of students from the college who have since graduated, learnt and then performed The Big Dance choreography. They were invited to perform it in a short film at the Olympic Village in London, and it was played across the world as the dance premiered.

This partnership led to further discussions with Richard Parr, the Producer from People Dancing, to think more about accessibility. These changes could really be seen in 2014’s choreography, where a broader range of people were included in the launch film.

Every year, here at the college we’ve adapted and interpreted this fantastic opportunity to dance and it has brought the community together to enjoy sharing movement. We have worked with local schools, community centres and brought a little bit of sparkle to the everyday grind in corridors at the college too.

This year, I was invited to be a Guest Artist Adviser as part of the creative process, in which they choreograph the Big Dance and the Schools Pledge. You can watch Akram Khan, internationally acclaimed choreographer talk about why he wants everyone to embrace dance. Amran Khan talking about the Big Dance

“I work in an outstanding college”

Fortunately I work in an outstanding college that supports and values innovation. I sit amongst many ‘Change Makers’, so I was supported to be able to impact on this national campaign. I hope also that it will help others who don’t identify with being a ‘dancer’ to get involved and have a go at expressing themselves.

On 6 November, after a 4am start, three trains and a long walk in the rain, I arrived at the dance studio in Roehampton University where I met Akram Khan and 30 dance students. They insisted that I participate in the warm up which was a great way to break the ice and fortunately not any of my muscles! After the warm up, I was able to watch The Big Dance choreography for the first time. It was a very rare treat.

But what could I offer? Well, that’s what I worried about to begin with. I’m a dance tutor at a specialist college in little old Lancaster and I’m not disabled myself. However, I could advocate for all the young people I’ve adapted choreography with and for. Young people who are unable to voice their own passions and needs.

Young people who explore their own physical capabilities, explore techniques and develop their creative and physical voice every day. I’ve learnt so much about dance through working at Beaumont, about the value and power of all movement and the contribution of all bodies as different, but equal.Sarah sitting with other people in a dance studio

I talked to Akram Khan about this and asked about what was important in his choreography.

I saw a change of emphasis from the creative team as they moved from specific movements being of great importance, to them considering and discussing what the significant points of the choreography are. They discussed what was more important: the convention of exactly mirroring the movement by these non-disabled dancers or the intention behind each movement being explored and interpreted.

They acknowledged the value in all responses to the choreography. Thankfully, my presence in the room was a significant development that showed a real shift in approach.

I’m excited to see how they’ve taken our input on board. I’ll continue to drive forward change for the young people I work with, and make sure their voice is heard to create new, exciting opportunities that provide rich and meaningful life experiences.

The Big Dance Pledge is now available,  with a worldwide performance day on 20 May. The Big Dance Week is 2-10 JulyFind out more and sign up!

Interested in Beaumont College courses? Visit their website and find out about inclusive dance

20 poems for 20 years: my experience as a wheelchair user

When Stephen was 16, he had a sledging accident that left him paralysed from the waist down. That was 20 years ago, so to mark the anniversary, he’s written 20 poems telling his story. They reflect on his experience as a wheelchair user, and how he finds society’s attitudes towards disabled people. 

Having worked on this project for the past couple of years I hadn’t really appreciated how intensely personal the subject matter was. For some people, colleagues, friends and even family, this was the first time I had really outwardly articulated what was in my head.

Being viewed differently by society

The poems covered everything from my accident, to recovering in hospital, getting to know my wheelchair and how I now feel 20 years on. As I started to write and the poems began to come together, I realised I was also writing about how it feels to have a disability and how that changes the way you are viewed by society.Stephen smiling wearing sunglasses as the sun sets

So I was pretty nervous when I came to post my first poem via social media. I used Lego figures to visually represent what I penned in poem form, because let’s be honest you are never too old for Lego!

My reasons for doing this were not so much about the anniversary itself but more about my reflections on spending my adult life as a wheelchair user. Not for a moment do I regret my accident. Life is simply too short. I’m very proud of who I am and what I’ve achieved but life isn’t and hasn’t been without its challenges. Naturally some of these challenges have been down to adapting to a new life with a physical disability but some have also been about my frustrations at being given a label and having to deal with the way disability is viewed in today’s society.

An emotional journey

Whilst all of my poems provoked some sort of emotion internally when I wrote them, it was the ones about discrimination that caused the strongest reaction. One of my poems is called The Acceptable Discrimination, and this is about the fact that in many situations it seems okay that there are barriers that stop disabled people from just being able to lead a normal life.

I live in London and whilst it’s a wonderful, thriving and vibrant city, it can also be incredibly frustrating. Every day things are made difficult or impossible just because it’s not set up to cope with disabled people. The easiest example of this is the sheer number of public buildings, shops and amenities that are no go areas due to steps.

Public transport is also nothing short of a national disgrace. The fact that large parts of the London underground are without lifts and level Stephen, in his wheelchair at the top of a skateboard ramp, with graffiti in the backgroundaccess to the trains is staggering to me. It’s also virtually impossible to travel on any overground train without assistance. We’re told this is because some stations are old or that trains are too high, yet in Scandinavia I’ve travelled on trains independently where every fourth carriage is lowered to the level of the platform. It really isn’t that hard.

Attitudes towards disabled people

I honestly believe that most of this is down to attitudes. We still live in a society where many people don’t think twice about using a disabled toilet, parking in a disabled parking bay or in front of a drop-down curb. Nobody would entertain using a loo for a different gender so why should a disabled toilet be any different? Just as frustratingly there isn’t a day goes by where I’m not asked if I need help, or being randomly congratulated for doing simple things such as living on my own, having a job or going on holiday.

Changing the way people see disability

The reaction to the poems has been brilliant and I’ve been overwhelmed by the comments I’ve had. What has struck me the most has been that some people have said they have challenged the way they think about disability. For me this is the biggest compliment I could receive.

I’d love nothing more than if we just looked at the person rather than seeing their physical appearance, race, age and gender first. We’re all the same really and we all have the potential to be brilliant. 

Here are two of my poems that I hope you will enjoy:

The arranged marriage

The first time we met I didn’t want you.

A lego man lying in a bed, with a wheelchair and a set of drawers next to himI didn’t want to even acknowledge your existence.

I had no choice but to take you and I resented you for that.

You were confident, brash, everything I wasn’t.

But in your own way you needed me.

There were others waiting to take you.

But you and I were brought together.

We had to make it work.

The first time was awkward,

I didn’t know where to put my hands.

Fumbled across the room.

You were patient, you made me take it gently.

And the first time we went out,

It was awful.

I cried hot, childlike tears.

I felt everyone was staring, judging us.

But you didn’t care.

You waited, patiently till I was ready.

And we haven’t looked back.

20 years

Man and chair.

The acceptable discrimination

I am denied entry because of who I am.

Hairdressers, restaurants, theatres and gyms.

A lego figure in a wheelchair, at the bottom of some stairs. At the top of the stairs is a lego waiter offering a glass of wineMany seemingly a step too far.

Unable to travel where I want on public transport.

Those special parts of the city forever out of reach.

That is until someone decides to give me a lift.

Not able to live or work where I choose.

Having to ask for help when all I want is just to blend in.

Made to feel like a second class citizen in a first class world.

This is the discrimination I face every day,

for physically being different.

But I am the same.

I commute, I work, I pay my dues.

I’m tired from the effort, this city, of it just being ok.

Tired of the fact it happens and is somehow tolerated.

Tolerated and ignored by those with the power to make a difference.

But it’s actually their indifference,

that makes it acceptable to turn the other way.

Have you got a similar experience of becoming disabled later in life? Have you found that attitudes towards you have changed?

You can read the rest of Stephen’s poems on Storify or his website, and follow him on Instagram and Twitter. 

My experience on People’s Strictly, as a dancer with MS

Trishna Bharadia was a contestant on the People’s Strictly for Comic Relief.

Trishna was diagnosed with Multiple Sclerosis at age 28 in 2008. She works full-time as a translator for an information services company but in her spare time has collaborated with various MS and disability organisations, to ensure that people with MS are supported and their needs are understood within the wider community and by the general public. Here she talks about her experience on the show. 

Dancing out of my comfort zone

I’m someone who has always loved the idea of dancing but never had the confidence to do it. Being diagnosed with MS brought a huge amount of unBlack and white photo of Trishna in rehearsal with her dance partnercertainty into my life and changed the way that I viewed things. The nature of the condition means that I could quite literally wake up tomorrow and not be able to move my arms or legs. No warning. It can just happen.

This led me to taking the bull by its horns and I started to do all the things that I’d always wanted. Dancing was one of them. I took up Zumba classes, where I really fell in love with dancing. It taught me that actually you don’t need confidence or even a certain level of physical ability to dance, you just need a passion for it and to be able to think outside the box.

Trishna wearing all yellow, posing with her dance partnerI’m a big fan of Strictly Come Dancing and when my sister heard that they were looking for people to participate in the first ever People’s Strictly for Comic Relief, she knew she had to enter me.

There were over 11,000 nominations and just six of us were chosen. It was an honour that the producers believed my story was worth telling and that the work that I’d done with various MS charities since being diagnosed warranted me making one of my dreams come true!

Facing Challenges

Dancing with MS or other chronic conditions or impairments isn’t easy. While I was having the time of my life on the show, dancing with the wonderful Aljaz Skornajec, behind the scenes I was also struggling with fatigue and the uncertainty of my condition. The four months were physically, emotionally and mentally tough, Trishna wearing a white sparkly dress, posing in a dance move with her partnerparticularly as I was still working full-time, as well as filming and dance training.  Training was anywhere between 10 to 25 hours per week for six weeks.

Just a few weeks before we were going to do our final dance, my foot went numb and I was terrified I was having an MS relapse; one of my relapses had previously involved me losing the feeling down one side of my body. Turns out afterwards that I actually had localised nerve damage from poorly fitting dance shoes, but it served to remind me just how uncertain my condition can be.

The production crew, other contestants and professional dancers became like a family to me. I’m used to having a strong support network around me, which enables me to do all the things that I want to do. On filming days it was my new Strictly family that ensured I was able to get enough rest and that adjustments were made to ensure I was being shown at my best.

Aljaz was fabulous and there were parts of our jive routine that we adapted and adjusted to take into account my fatigue and wobbliness when my muscles started tiring!

Doing Strictly has helped me to appreciate further what I’m capable of physically and also allowed me to push myself and find Trishna and her dance partner giving each other a high fivenew limits. I would do it all over again given half a chance! I was supremely aware, however, that not everyone with MS would be able to do what I did. I was contacted by the Wheelchair Dance Sport Association (WDSA) and have since helped them to promote wheelchair dancing. I mean, who says that dancing has to be standing on two legs? Dance is a beautiful and challenging art form and disability definitely doesn’t have to be a barrier to people who want to give it a go!

Want to know more? You can connect with Trishna on Facebook or Twitter

Have you got a dancing story you’d like to tell us? We’d love to hear about it – just comment below. 

‘Are you blind, love?’ Why attitudes matter – #EndtheAwkward

Guest post from Elin Williams, a student from north Wales, who is visually impaired. In this post for our End the Awkward campaign, she talks about two different types of awkwardness she’s encountered.

Scope’s research shows that two-thirds of people feel awkward around disability, so when Emily Davison aka Fashioneyesta asked me to join in with Scope’s End the Awkward campaign, I couldn’t wait to get involved and share my own cringey moments…

‘Are you blind, love?’

A few years ago I was travelling alone on a train. I hadn’t long been travelling independently, and was still getting used to using my cane on a regular basis. Growing up, I always felt that the cane made me stand out and was reluctant to use it for fear of not looking ‘normal’.

Elin, a young woman, with her guide dog

So there I was. Along came the food and drinks trolley, and I plucked up the nerve to say ‘excuse me’ to flag the trolley down. I think this was the first time I’d ever done this – not being able to make eye contact or see people’s facial expressions has always made me  nervous of situations like this.

I asked the man pulling the trolley: ‘Do you have any drinks on this trolley?’

My inquiry was met with the scornful reply: ‘Ha! Are you blind, love?’

‘Well, yes,’ I said, lifting my folded cane from the seat next to me to show him.

The deathly silence that enveloped the passengers nearby let me know this encounter hadn’t gone unnoticed. I obviously couldn’t see how red he went, but considering the tremor in his voice, and how his hand shook when he dropped my change, I think he was a little embarrassed.

But he’d embarrassed me too. His smart-arse attitude made me feel so small and stupid.

A better experience

Only about a month ago, I and two other visually impaired friends had just got off a train and were standing outside the station, figuring out whether to get a taxi or to walk home. I had my guide dog Jazzy with me, while both my mates were using canes.University of Chester student Elin Williams aged 19 from Porthmadog with her guide dog Jazzy. Elin was born with a degenerative condition called Lebers Congenital Amaurosis and lost most of her vision when she was 15. A Welsh speaker, she is studying English Literature. Elin has written a first person story about her first year with Jazzy as a student.

A young guy came up to us and quite smugly said: ‘Did you have fun hiking today, guys?’

‘Those are some funky looking hiking sticks you have there,’ he elaborated, going on to ask us where exactly we’d been hiking, in Cambridgeshire, where there are no mountains…

It finally dawned on us that the guy had mistaken the canes for hiking sticks! We explained that we hadn’t been hiking, that we were blind and that they were our canes, whilst trying not to laugh along with his mates who’d witnessed his blunder.

Pointing to Jazzy, I added: ‘Yeah, she’s my hiking dog. I ride her up the mountains…!’

The poor guy was pretty embarrassed and very apologetic, but we reassured him that we weren’t offended.

It’s attitudes that make things awkward

From my experience, it’s much better to laugh at yourself and with others rather than get stressed out or touchy about silly mistakes.

Elin walking with her guide dog

What makes it awkward is when the perpetrator can’t laugh along with you, because they’re too mortified at having possibly offended you to see the funny side. It makes it much more awkward than if they’d just share the joke.

End the Awkward is a fantastic stepping-stone towards dispelling the taboo that surrounds disability, but I think it’s also important to remember that it starts with us as disabled people.

If you’re uncomfortable about your impairment and don’t know how to talk about it – and laugh about it – you can’t make others feel comfortable addressing it either.

A version of this story was first published on Elin’s blog, See My Way. Want to know more about ending the awkward? Watch our awkward short films, produced in partnership with Channel 4.

Photos courtesy of the Daily Post, north Wales.

Five wheelchair exercises you can try at home

We’ve asked Kris, founder of Wheely Good Fitness, to do a guest blog for us on his top five stretch exercises to help increase flexibility and movement.

Kris is taking part in the Virgin London Marathon 2016 – you can sponsor him online.

For those of us new to exercise or restricted by the side effects of disability and health conditions, starting can be extremely daunting. Many of us will be familiar with the saying ‘use it or lose it.’ So it’s important to try as much as possible to keep what we have and improve where we can, to prevent additional health problems.

One of the first things we can lose is our flexibility. Reduced flexibility can restrict our movements, causing stiffness and aches.  Performing stretches on a regular basis can help maintain and improve flexibility, and can easily be made a part of your daily routine.

Here are five important upper body stretches that can be done at home – you can sit either in your wheelchair or on any chair in your house. For all of them, remember to sit upright, with belly button pulled in tight, feet hip-width apart (if your wheelchair allows it).

Chest Stretch

  • Shoulders down
  • Take the arms out to the side of the body
  • Palms facing forward
  • Arms at shoulder heightMan in wheelchair performing chest exercise with arms outstretched
  1. Breathe normally throughout, with your head facing forwards.
  2. Keep your shoulders relaxed. Bring your arms slowly together in front of your body, so your palms touch.
  3. Keep them straight and at the same height as your shoulders.
  4. Slowly take the arms out to the side, with palms facing forwards, until you can feel a stretch across your chest.
  5. Try to hold the position for up to 10 seconds.

Back stretch

  • Shoulders relaxed
  • Take the arms forward slightly, rounding the back
  • Head tilted forward
  • Arms out straightMan in wheelchair performing back stretch, with arms stretched forward and head down
  1. Keep shoulders relaxed and avoid rolling them forward as you move into the stretch.
  2. Bring your arms in front of your body, keeping them straight, palms facing down.
  3. Imagine there’s a rope tied around your wrists, pulling you forward, so you can keep extending your arms.
  4. Allow your lower back to round a little and tilt your head down – you should feel a stretch through the lower and middle part of your back.
  5. Breathe normally, and be aware of your balance.
  6. Try to hold the position for up to 10 seconds.

Upper body stretch

  • Take the arms out to the side of the body
  • Bring the arms up and over the head
  • Head facing forwards
  • Take the stretch up through the bodyMan in wheelchair performing upper body stretch, with arms stretched upwards
  1. Keep your shoulders relaxed, avoid lifting them up to your ears when you start the stretch.
  2. Start with your arms down by your sides, then slowly bring them out to the side (like wings), taking them as high above the head as you can. As your arms reach shoulder height, lift your chest and torso with them and try to make yourself taller.
  3. Try to hold the position for up to 10 seconds.

Oblique stretch

  • Take the arms out to the side of the body
  • Bring the arms up to shoulder height 
  • Keep upper body fixed
  • Rotate the body to the sideMan in wheelchair performing oblique stretch, with arms bent out to the sides
  1. Keep your shoulders relaxed, avoid lifting them up to your ears when you start the stretch.
  2. Start by bringing your arms out to the side of the body, elbows flexed and at shoulder height. Keeping your arms, head and upper body fixed, rotate to the side using the lower part of your back until you can feel the stretch down the sides of your body.
  3. Try to hold the position for up to 10 seconds, then switch and do the other side.
  4. Breathe normally, and try not to lean into the stretch or you won’t get the full benefit.

Hand stretch

  • Shoulders down
  • Take the arms out in front of the body
  • Palms facing down
  • Arms out straightMan in wheelchair performing hand stretch, with arms stretched out forward
  1. Keep your shoulders relaxed, avoid lifting them up to your ears when you start the stretch.
  2. Bring your arms straight forward in front of your body, palms facing down.
  3. Extend your fingers and thumbs, widening as much as possible until you feel a stretch through the palm of your hand.
  4. Try to hold the position for up to 10 seconds, then switch and do the other side.
  5. Breathe normally, and keep facing forwards.

Some of these stretches can be adapted into exercise movements that you can perform to your favourite music:

  1. Begin by moving the arms in a gentle marching movement to the beat.
  2. Once comfortable change to a similar move as you did for the chest stretch, gently taking the arms out to the side and back in front again eight times, almost like a wide clapping movement and then go back to marching again.
  3. If you feel able to continue, you can then bring in a version of the upper body stretch by taking the arms to shoulder height and down again, repeating 8 times before going back to the march.
  4. The oblique stretch can then be added in for eight moves before returning back to the march.

This short sequence will give you a little bit of an aerobic workout and you can increase how long you perform it as it becomes easier to do.  Begin gently if only for a couple of minutes depending on how challenging you find it and progress as you feel able.

Kris is taking part in the Virgin London Marathon 2016 – you can sponsor him online.

Why the Prudential RideLondon-Surrey 100 2015?

There’s just one week left to get your exclusive free place in our Prudential RideLondon-Surrey 100 team. You could be cycling the 100 mile route alongside people just like Chris who will be taking part for a third time.

“The Prudential Ride London is a huge and fantastic event that I have taken part from the first year. Finishing in the Mall outside Buckingham palace is an amazing experience that gives you a great feeling of achievement. Starting at the Olympic Park is also brilliant because you are following in the wheel tracks of the 2012 athletes who undertook the same challenging course. The support we get from the local communities is absolutely phenomenal with residents coming to the end of their driveways waving and cheering us on even when the weather was really bad last year!

I have a 16 year old son, Kieren, who has Downs Syndrome, so I’ll be riding for him. He needs support with basic day to day things. We’re lucky in North Wales because we have quite a good support network around us. With him being 16 we’re at the transition stage into college and further on in to adult life – obviously Scope services and their helpline is going to be quite important to us.

I’m hoping my family will be coming down for event day although this will depend on how Kieren is. I hope to bring him down with me and then he can come to the start and be there at the finish – fingers crossed he will be there but if not he will be there in spirit.”

Get your place in our team for free today and be treated to a hero’s reception, a massage in our chill out zone and TLC for your bike! We’re hoping to raise over £314,000 and will have our biggest team ever with over 600 riders taking part for Scope.

Four things we’ve learned about hospital stays – #100days100stories

Guest post by Anna from Oxford. Anna works for Scope coordinating our Face 2 Face befriending service in Oxfordshire. She has a disabled daughter, Scarlett. Anna is sharing her story as part of our 100 days, 100 stories campaign.

RS3358_Anna_Hinton_0408.JPG-Anna_Hinton_0408_twothirds

I’m not sure how many times we have been in hospital over the years.

My eight-year-old daughter Scarlett has a genetic condition which means she can’t produce hormones the body needs to deal with stress, illness or injury. This means a sickness bug is life-threatening for her. She also has autism and sensory issues, which means she doesn’t always realise when she’s unwell, or let us know about it.

Scarlett is going into hospital again for surgery in two weeks’ time, and it’s led me to reflect on some of the things we’ve learned about hospital stays…

Every child has unique challenges

Scarlett’s sensory issues mean she sometimes has extreme reactions to things that might seem harmless. For example, she has always hated having anaesthetic gel (‘magic cream’, in children’s hospital-speak) put on her arm before she has a blood test or an IV tube put in.

When she was a baby I thought it was because she was anticipating the pain, but now I know it’s because the feel of it makes her sick. She actually vomits looking at some creams just at the thought of it on her skin.

Scarlett and her two-year-old sister both looking through cameras, standing at the top of a hill
Scarlett with her little sister, Heidi

Explaining this at hospital can be hard – she has been told many times “Don’t worry, it doesn’t hurt”, but to Scarlett, it really does!

It’s hard work for us, too

I am up almost 24 hours a day when Scarlett is in hospital. During the night I’m often up every hour to comfort her, or help get her to cooperate. It’s difficult to even leave the ward for a cup of tea.

A lot of care is expected to come from us rather than the hospital staff. The nurses do an amazing job, but they are often very stretched, and I can’t imagine what would happen if every parent handed over all their care duties to them.

It is also really expensive! My husband Andrew, Scarlett’s stepdad, often has to take time off work, and there are things like parking and food to pay for. Parents and carers lose their DLA if the person they care for is in hospital for more than a week, and I think this is shocking.

Explaining things can be difficult

It can be hard to explain to Scarlett what’s happening, and particularly why she has to endure so much that her younger sister Heidi doesn’t.

I’m always on the look-out for children’s books about going to hospital that don’t involve ‘getting better’ at the end. I have seen lots about having tonsils out, or a broken leg, but Scarlett’s condition will never go away, which can be hard to explain.

Scarlett and Heidi on a toy tractor

I find the best approach is to be fairly honest and say that the medications, procedures, operations and masses of appointments are there so to give her the best chance of staying well.

…But it gets easier

Taking Scarlett to hospital, and seeing her looking awful, has become less of a big deal over the years, but it is always a reminder of how fragile she is.

Scarlett lying back on a sofa, stroking a cat
Scarlett with Dolly, one of our cats

When she was born, I remember being scared about taking her home because there was so much to remember. I was so anxious that I even bought a breathing monitor after a scary incident when I couldn’t wake Scarlett up.

Even now, I find myself looking at the doctors’ faces to see if they seem worried, and starting to panic – what if this is the time things don’t turn out okay?

But generally it has been far easier than I thought it would be in those early days. You adapt as a family, and Scarlett is very happy, lively and brave in dealing with the things life has thrown at her.

We’re into the final weeks of our 100 days, 100 stories campaign. Read the rest of the stories so far.

My daughter cannot speak, but we communicate in so many ways – #100days100stories

Guest post by Amanda, who is coordinator of Scope’s Face 2 Face befriending service in Brighton. Amanda’s daughter Livvy (below) has very complex impairments and does not communicate verbally. Amanda has shared her story as part of our 100 days, 100 stories campaign.

Head and shoulders shot of Livvy, looking down

One of the first questions people ask me when they meet my amazing 14-year-old daughter Livvy is, “Does she talk?”

Well, Livvy has no spoken language – she is ‘preverbal’. But, as we have learnt, there’s more to communication than the words we say.

I remember in the early days being so desperate to hear her voice. She babbled on cue at six months, but after an ear infection at eight months, she became eerily silent.

At first, we suspected her lack of communication was down to glue ear and that she couldn’t hear us, but after two grommet operations the words still didn’t come.

Livvy wasn’t playing social communication games such as peekaboo. She didn’t wave or clap. We spent hours with an inspirational speech therapist – she virtually stood on her head to get Livvy to engage, but it was very difficult.

Livvy with her brother Harry
Livvy with her brother Harry

Livvy then went through a stage of saying the word ‘more’ in a low, drawn-out way. You could sense the effort it took to push the word out. She would over-generalise this word, using it for everything.

And then, one day, she stopped, and we haven’t heard any words since.

Body language

But so much of our communication is non-verbal. Livvy’s body language is key to us understanding her mood, and she uses it to express choices or even an opinion.

This can be very subtle – a sideways glance, or a brief movement of her arm. She lets us know that she would like to get out of her wheelchair by moving her legs and arms and pushing on the sides.

Livvy can express pleasure by laughing, or annoyance with a low, irritated growl. She lets us know she is upset or doesn’t want to do something by raising the intensity of her vocalisation, or using a deeper tone of voice.

Livvy smiling at the camera

She most definitely recognises voices, and will turn to familiar people. I remember a few years ago rushing up to school as Livvy was not well after a very severe seizure.

Staff had struggled to calm her down and Livvy was pacing round the room, very agitated. I walked in and she immediately calmed down. It was a really memorable moment for me.

Livvy also used PECS (Picture Exchange Communication System) for several years before her epilepsy became so severe that it was too demanding.

We felt the power of this was that she realised she was sending a message to somebody else – she was having a two-way exchange, the very core of a conversation. We’re now looking at eye gaze technology as a way for Livvy to make choices.

Livvy knows she is heard

We chat away to Livvy constantly. We have no sense of how much she understands, so it is important to tell her as much as possible out of respect.

Family photo of Livvy, her brother Harry and dad Neil, smiling at the camera
Livvy with her dad Neil and brother Harry

We use intonation to give her a sense of what we are saying. We get close to her, we sit with her, I put my face very close to hers and tell her I love her. She cannot say it back but, very subtly, she will often smile.

Livvy knows that she is loved, that she is valued, that she is heard.

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

Read tips from our online community on non-verbal communication.

There’s no sign outside: it’s just my home – #100days100stories

Guest post from Tony, who lived at Scope’s Lingfield Avenue care home in Surbiton until it closed in November 2014. He now lives in supported housing nearby. Tony’s story is part of our 100 days, 100 stories campaign.

It’s important to me to be independent. I’ve had a couple of jobs – one in an off-license serving customers, one in a stables working with horses, one in a music shop.

At the moment I’m working in a garden centre in the grounds of Springfield Hospital in Tooting. In an ideal world I’d like to work with children with special needs or learning disabilities. I had a voluntary job in a school for students with special needs for five years.

Living in a care home

I’m 47 now, and I lived at Lingfield Avenue (pictured above) for close on 20 years. Some parts of it were good and some parts of it were bad. When I first went there, there was no lift at all, so wheelchair occupants couldn’t get up to the second floor. Some people would have to overreach for the sink because it wasn’t at their height. All the bathrooms were shared.

I didn’t feel I had the support to live as independently as my disability would allow. It was just the way it was run, I suppose – I felt it did not allow residents to realise their potential.

Moving out

When the word got out that Lingfield Avenue might be closing, and I was made aware of it, it was a shock. In a way it was a bad thing, but in a way it was a good thing. For me it was good, because I’d always wanted to move somewhere that was less care-orientated.

One of my social workers said to me that I could try my own flat, but I wasn’t ready for that, and I’m still not now. So they found me the place I live now, which is supported housing.

Tony using his laptop in his room

I share with a few other residents, and compared to Lingfield Avenue it’s brilliant. You can use whatever independence you’ve got, and the staff really encourage you to do so.

Being more independent 

You can do your own cooking – anything you want to do really. I keep asking one member of staff if I can make my own breakfast, and he says, “you know you can, you don’t have to ask me!”

They say to me, “If you need help, just shout out and we’ll be there.” So far I haven’t had to ask for it much, but that doesn’t mean I can’t ask.

Exercise book with handwritten notes about gardening
Tony keeps detailed notes of his work at the garden centre

I had to get used to a new area, new bus routes. As yet I haven’t gone from here to Tooting by bus, but I’m itching to try it. One of the other things I like about living here is that they haven’t got a sign outside saying what the organisation is. It’s more homely, because there’s no label – it’s just a person’s home, rather than ‘residential accommodation’.

Looking ahead

In the future I’d like to find some form of paid employment again, because I don’t only want to help myself, I want to help the general public.

I’m happier now I’m established here, and I’m far more independent. One day, when I’m ready for it, I quite like the sound of moving into my own flat.

Read the rest of the stories from our 100 days, 100 stories campaign.