All posts by emmasterland

Digital community specialist, Scope

Top tips for paying off Christmas debt

The last cracker’s been pulled, the decorations are coming down, now it’s time to face the bank statement! Surviving the Christmas debt hangover is always a big issue at this time of year, so Scope’s helpline have compiled a list of top tips to get you back into financial shape for 2016.

1. Prioritise your outgoings

Your priority outgoings are your rent or mortgage, council tax, utility bills and court fines. You should pay these bills first. Don’t avoid dealing with these, as they will get worse if left.  Do not be afraid to talk to your lender/landlord/local authority/energy provider if you are having financial difficulties. They might be able to help.

Draw up a budget using the Budget Planner on the Money Advice Service website. Analyse your income and expenditure and keep copies to send to the relevant people so that they can help identify areas in which you need some extra support. If you are having difficulty with any of the above, please call us free on 0808 800 3333 and speak to one of our helpline Information Officers or email helpline@scope.org.uk.

2. Maximise your income

Are you getting all of the benefits you are entitled to? Try our benefits check – you may be able to apply for other financial help using our grants search.

3. Discretionary Housing Payments

See Scope’s information about Discretionary Housing Payments and how they can help you with your housing costs if you are facing hardship.

4. Are you struggling with debt?

There are various sources of help available to help you manage your finances. You can seek help from charities such as Step Change, Money Advice Service and National Debtline. Do not pay for financial advice. There are plenty of advice agencies around who offer free advice.

Avoid payday lenders who charge excessive amounts of interest and avoid debt consolidation without getting advice about this first. You can access money advice at your local Citizen’s Advice Bureau, approach your local credit union and, in some areas, your local council.

5. Local welfare assistance schemes

If you find that you have no money for essential bills or you need help due to an emergency or unforeseen event, you can apply to your local council for welfare provision payments which replaced community care grants and crisis loans in April 2013. You can find your local welfare assistance scheme on the Child Poverty Action Group (CPAG) website.

Each scheme has different criteria but Local Welfare Assistance would usually be considered as a last resort and you may need to access money advice to qualify for the scheme. Your local authority may not help you until you have exhausted all other options including a Budgeting Loan.

6. Fuel costs

See the pages on our website to help you tackle your fuel bills and get help to reduce large utility arrears bills – see Scope’s information on helping with fuel costs.

7. Start saving for Christmas 2016

If 2016 goes as quickly as 2015 then it will soon be Christmas again so it might be a good idea to start saving now. See the Money Advice Service’s information about Saving for Christmas for some helpful hints to help you stay on track.

8. Sell unwanted items for extra cash

As we feel the pinch more of us are buying second hand goods. You can sell unwanted items in a variety of different ways and this is a great way to make money from stuff that is lying around the home. Why not put your unwanted belongings on Ebay or organise a car boot sale with friends or family. You can even sell your items at an online car boot sale. Sell your unwanted gadgets on sites such as Cash In your Gadgets, Music Magpie or your local CeX shop.

For more money-saving tips why not check out these top tips from our community.

Tips for a good night’s sleep

We are currently running a sleep appeal. Have you or your child ever had problems sleeping? Read this blog for some brilliant tips from our Sleep Practitioners. 

Consistency is key

If your child wakes in the night, return them to bed, tuck them in and say, “It’s night time (name) go to sleep”. Don’t enter into any discussions or negotiations.

Social story

If your child has learning disabilities and has troubles settling or sleeping, especially if they are scared of having bad dreams, try using a social story explaining what dreams are and that nightmares are just bad dreams.

Natural wakings

We all wake naturally four to five times a night. Once we have learned to sleep, we don’t wake fully during these natural wakings. One of the common reasons a child will wake fully is because the conditions have changed – for example,  if you were with them when they fell asleep, then vanished.

Family photo

Try putting a family photo in your child’s room, as that can be comforting for natural night wakings.

Smells like mum

Child sleepingTry putting your own pillow case on your child’s pillow, as the scent will be comforting.

No controlled crying

We don’t advocate controlled crying as an approach as it’s too emotional for parent and child, and only makes your child over stimulated.

Golden hour

There is a ‘golden hour’ before bedtime.  If your child is lying in bed for too long before bedtime, they will not associate bedroom with sleep. If their bedtime routine is too short they will be too awake.

Keep it boring

Children come up with some fantastic distraction techniques to avoid going back to bed at night! If your child asks for a drink, offer water. If they’re thirsty they’ll drink it. If not, they’ll get tired of being given a boring drink after a couple of nights and stop asking.

No vanishing acts

Make sure your child is awake when you kiss goodnight. If you stay while they fall asleep and then sneak out, it will only upset them when they wake naturally in the night and you have vanished.

Start earlier

Children reading a book in bedIf your child is taking a long time to fall asleep, start their bedtime routine earlier, so they associate bed with sleep.

Give it time

It can take two weeks for a child to learn a new behaviour, so consistency is key to whatever approach you take. Parents who say they’ve ‘tried everything’ may not have given each approach long enough.

Sleep diary

It is not uncommon for children with cerebral palsy to wake frequently at night because they become stiff or experience pain, and need repositioning. Using a sleep diary and hypnogram can help you work out when to do it so your child is in a deeper stage of sleep and you don’t fully wake them.

Gradual changes

Disability can be exhausting and many disabled children need extra sleep. As children get older they will need less sleep, so make gradual changes, say around puberty, moving bedtime by 15 minutes every 3 days.

Special teddy

Try keeping a teddy that belongs to you close to you for several days, then allowing your child to look after it over night and return it to you in the morning. This can act as reassurance that you will be there in the morning because you will need your teddy back.

Gradual exit

Mother checking on child sleepingIf your child gets comfort from you being there while he/she goes to sleep at night, try making a gradual exit. Start by sitting on the bed holding their hand with a glove on, removing yourself gradually over 2/3 weeks leaving them with the glove.

Hold off the lavender

Too much lavender can prevent the production of melatonin, so don’t overdo lavender in the bath before bed. Make sure bath is half an hour before bedtime, giving time for your child’s body temperature to drop.

Wind down time

Start preparing your child for sleep an hour before bedtime, turning off the TV, computer etc, and doing some reading or fine motor activities which will help with relaxation and the production of melatonin.

Were these tips helpful? Please donate to our sleep appeal so that more families of disabled children can get the support they need.

For more great tips and ideas, why not see what other parents have tried. Check out our fab new sleep tips section.

“We’re all part of a community, both on and offline.”

Continuing our celebration of Volunteers’ Week, we talk to Niki Michael who volunteers for Scope’s online community. Niki is mum to 10-year old Maria, who has Dystonic Quadraplegia, as well as two younger children, aged 7 and 5. Here she talks about what motivates her to volunteer and why she enjoys it.

When my daughter was first diagnosed, the Scope forum – as it was then – was a great source of information and support for me. Ten years’ later, when I found out Scope was launching an online community, I wanted to be a part of it, as I felt might have something useful to give back.

Being a ‘community champion’ involves welcoming new members, keeping an eye on conversations that I might be able to contribute to and promoting the online community to people who may not be aware of it. I log in a couple of times a week, and reply to posts on topics ranging from education to medication. They’re always quite varied!

Maria-blog-4
Niki and her daughter Maria

My daughter is about to go into a mainstream secondary school. She uses a wheelchair and a communication aid, so I’m happy to offer any insights I’ve gained through raising her and championing her rights.

We all have something to contribute

I think it’s really important for families of disabled children to look out for one another, support each other and impart their knowledge. Parents on the community understand completely the stresses and challenges of raising a child with complex needs.

For me, being able to support other parents is incredibly rewarding, and introducing new people to the community – knowing it will be a great resource for them – is great.

We don’t live in isolation, we are all part of a bigger community, both on and off line, and if we want that community to be more tolerant, compassionate and fair to disabled people, then we all have a responsibility to be part of changing it. Volunteering your time for something you feel passionate about is a great of doing that.

My experience as a community champion has shown me that collectively we are stronger , and we all have something valuable to contribute. The community is a really positive space. Even when someone is struggling, the responses from others are always solution-based, which is really important. When you ‘re having a bad day, having someone there to lift you up emotionally or with really solid advice may be just what you need.

You can see Niki in our online community here.

Meet our other community champions and find out more about Scope’s online community.

Enjoy live music? Why not join Gig Buddies!

It’s not always easy for music fans with learning disabilities to get out to gigs. But Gig Buddies, a volunteer project run by the charity Stay Up Late, is changing all that. Director and co-founder, Paul Richards explains how.

Gig Buddies was one of those ideas you assume someone must have already thought of. We were wondering if there was a way to make use of the spare seats in people’s cars as they travelled to gigs, and whether people with learning disabilities who love the same music could occupy those seats.

That would give people with learning disabilities an opportunity to, not only see live music but also extend their social networks beyond typical care settings.

It was an idea that developed, and we spent around a year laying the groundwork for the project before it launched in Jan 2013. We conducted some research to find out what the barriers were to people getting out. We found the reasons were things like having no money, being low in confidence, not being able to access public transport at night, not knowing what’s going on, and not having anyone to go with.

But what we also found was there was a real desire for people with learning disabilities to be getting out there.

What makes a good Gig Buddies volunteer?

We also thought about why people didn’t volunteer, and we decided it was largely because they didn’t have the time or didn’t know what to do. So the idea behind Gig Buddies was simple: it was about turning something people enjoyed doing into a volunteering opportunity.

There are really only two requirements: you have to be a nice person, and you have to have an interest.

We have volunteers from a wide variety of backgrounds, with a diverse range of interests. While Gig Buddies started out being about live music, it’s now grown to include things like the theatre, nature walks, church and sport. The point is that participants are in control of choosing their ‘gig’, whatever that may be.

One of the key aspects of Gig Buddies is that it’s all about relationships. It’s about enabling socially isolated people to develop friendship circles, and we spend a lot of time meeting with everyone – participants and volunteers – to find out what their interests are.

We ask that every volunteer commits to at least one gig a month and also meets up for a coffee once a month with their buddy to plan the next trip. All our volunteers receive training and on-going support once they have been matched.

The other core principle of Gig Buddies is about enabling people with learning disabilities to make real choices about the way they lead their lives, and to pursue interests they enjoy in their local community. At Stay Up Late we often get asked why we don’t organise more events for people with learning disabilities. Our belief is that all events should be open to everyone, including people with learning disabilities. This is something that underpins our work.

What’s next for Gig Buddies?

We now have over 60 participants and 60 volunteers, and a full waiting list. We are committed to developing our project in Sussex.
However, we can’t run the project beyond Sussex, as its strength of relies on relationships. So we’re aiming to share it.

Our first pilot site is in Sydney, Australia – with ACL Disability Services – and it’s attracted a lot of excitement over there. Several other large cities also wanting to get involved. The second pilot site is in Midlothian, and being run by Thera Scotland.

The next step is to work with organisations who share the same ethos as us, and this year we’re planning to invite another 10 organisations to work with us and set up Gig Buddies in their locality.

There’s a lot more I could write about the project, but it’s probably best left to one of our participants, Bella to tell you about it. Bella has a mild learning disability, depression and anxiety. She has had a Gig Buddy for a year now, and has gone to lots of gigs.

Bella says: “Before I had a Gig Buddy, I felt like I was lost at the weekends. I had never been to a music gig before, but having a Gig Buddy has meant that I’ve discovered new music. It means that I can travel to Brighton, which I couldn’t do before. Once you start going out you are more able to do other things – it improves your confidence.”

For more information about Gig Buddies visit the Stay up Late websiteStay Up Late is a small Brighton based charity that promotes full and active social lives for people with learning disabilities.

What the teachers told me about Dominic reduced me to tears

Guest post from Caroline White, a writer and speaker. Caroline’s son Seb made headlines when he became the first model with Down’s syndrome to star in a major UK TV ad. For National Sibling Day she’s written for us about Seb’s relationship with his brother Dominic.

The week that Seb was born is a bit of a blur to me. I can remember snippets but it was so fraught with emotions that it is hard to recall it with much clarity.

One thing I do remember very clearly is saying to Simon, my husband, how I wanted us to have more children. One of the reasons, I am ashamed to admit, was because I was feeling sad about Seb’s diagnosis of Down’s syndrome and the thought of going on to have a “normal” experience helped soften the blow. I also felt that having more children around would benefit Seb and I had visions of a busy bustling house. It helped me see the future a little brighter.

Falling more and more in love with Seb

I went on to fall pregnant fairly quickly. It was for all the wrong reasons and I look back and feel so sad that I was so desperate to have another baby instead of enjoying the precious one I already had.

I lost the baby at 11 weeks. I am not negating how tough it is for the many women who miscarry their pregnancies, and at the time I was devastated, but it turned out to be a positive thing. My body was emotionally and physically wrecked, not only from becoming a new mother, but also from the emotional turmoil and shock that came with the diagnosis. A few months later I lost another at about the same number of weeks.

Over time, Seb’s diagnosis became a much smaller part of him and I became less fixated about having another baby. I began to realise that I would be every bit fulfilled and enriched as a mother if Seb was the only child I ever had, although I did still like the idea of Seb having siblings around him. And that’s when I fell pregnant with his baby brother.

Along came Dominic

The day we brought Dominic home from hospital I remember thinking how enormous Seb had suddenly become. Two and a half years older, Seb’s little face looked so vulnerable and confused. I also carried with me guilt that I had felt so euphoric at Dominic’s birth, something that was missing with Seb.

I had the usual maternal worries – would they get on? Would Seb be jealous? The worries were magnified too. Would Dominic grow up to resent Seb? Would he be embarrassed of him? Would Dominic be bullied? I worried about the “burden” of Seb on Dominic’s little shoulders. I would never want Dominic to feel his wings were clipped or that he was responsible for Seb but at the same time I hoped he would feel a certain amount of responsibility and care about what he is up to. I worried (and still do) about when Simon and I are no longer here and Dominic would have no immediate family to talk things through or make joint decisions with.

And so, it seemed, overnight…..along came Polly. Seb’s little sister.
And from the minute he set eyes on her, he was besotted. I will never forget the first night she had with us at home, he crept out of bed in his pyjamas and I found him sitting next to her bouncy chair, tenderly reading a Peppa Pig book to her (whilst she was asleep).

Becoming great friends

Dominic, Seb and PollyAll three children are very close, particularly Seb and Dom. Just the other day someone said to me “they’re such great friends aren’t they?” and yes, they really are.

Far from resenting Seb, Dominic has the utmost respect for him. He looks up to him, he sees him as his big brother. He wants to include him in everything he does and misses him when he is not with him. If he makes anything at pre-school his first thought is how he wants to share it with Seb. Often he will say he can’t wait to tell Seb something about his day and when Seb has been told off he will sneak off to keep him company – even if the telling off is because he has been mean to Dominic. On a recent shopping trip, Seb was refusing to come with us and we pretended to go off without him – Dominic shrieked and refused to move too. He was visibly upset and stayed put with Seb.

There have been so many occasions too when Dominic has had to be very mature for his age. Seb has a tendency to run or scoot off – he seems to live in the here and now with no thought of consequence. It happened several times when Polly was a newborn baby. Post c-section, I was faced with asking a 2 year old Dominic to stand in charge of his little baby sister whilst I raced after Seb. He has never complained about it and just got on with it. There was also a trip to Longleat when Seb vanished. It is a long story, but 45 minutes of hysterical mother, like a scene from Eastenders, all witnessed by Dom – thankfully with a happy ending. It is something Dominic remembers today and, as a result, he always has his eyes fixed on Seb and will tell me as soon as it looks like he might be wandering off.

The “biggest heart”

A Dominic and Sethfew months ago it was Dominic’s pre-school parents evening. I was exhausted and almost didn’t go. It is not easy to park, it was dark and cold, I didn’t think they would tell me anything groundbreaking and I had a million reasons why I couldn’t face it. I made the effort to go though, because Dominic IS always overlooked. What the teachers told me completely took me aback.

They told me that his empathy levels are incredibly mature for a four-year-old. They said he will always stop and help anyone who needs it, that he cares about his peers and that he has the “biggest heart” in a four-year-old that they have ever seen. He always thinks of others and wants to share his experiences and belongings with everyone. The feedback reduced me to tears.

Dominic has seen me care for Seb and as a result he now looks out and cares for others too. I have unintentionally set a good example and I couldn’t be more proud.

Will Seb’s siblings grow to resent the extra attention that Seb naturally commands?

Seth and DominicWe have never told Dominic that Seb has Down’s syndrome. Unless he asks me, I don’t see we have any reason to tell him. Down’s syndrome is a medical diagnosis and, whilst it is useful in preparing health care and educational plans, I want Seb’s siblings to just see him as Seb. No pre-conceived ideas or assumptions. Just Seb.

I am not naïve enough to think that the “differences” between them won’t always go unnoticed and Dominic did take me aback a few months ago in the kitchen when he said “Seb talks funny, doesn’t he?”. Stumped for a response, I said “well, we are all different aren’t we? Some of us are good at running, like Seb, and some of us are good at talking, like you” and he turned to me and said “Maybe he was talking in Spanish, he’s good at Spanish”.

I think it all boils down to inclusion AGAIN.

By being included in our typical family unit, Dominic gets to see that Seb is a person, not a condition. He sees the bright, witty, bundle of energy that Seb is. A hard working, older brother with a fantastic sense of humour and an obsession with football. A person of equal value, that brings as much to our family as any of us. An important and key component in all our lives, that is human and real and not a paragraph in a text book or a group of outdated stereotypes.

And so it seems, yet again, my unnecessary fears about the future that stemmed from a diagnosis of Down’s syndrome have not become a reality. Seb continues to teach us all about life and equality, humanity and priorities, and see the whole world differently. Not one of us in this family, least of all his siblings, would swap a single thing about him.

You can follow Caroline on Twitter.

I never felt like my childhood was unusual – #100days100stories

Anne’s twin brother has cerebral palsy. Today is National Siblings Day, and Anne is sharing her story as part of our 100 days, 100 stories campaign.

My twin brother, Jack, has cerebral palsy and can’t walk or talk. Having a disabled sibling feels completely normal, because I’ve never known anything different.

There were resources offered in school for young carers but I never felt they were applicable to me, as I’ve never felt that I go beyond the call of duty in taking care of him.

My parents, social services and carers feed, wash and change him, and I read to him and entertain him. I never felt like my childhood was unusual, and my parents always made sure that I didn’t feel left out.

No references

Even though I feel like I’ve had the best possible experience of having a disabled brother, there were still limited examples growing up of people in the same situation.

None of my friends had disabled siblings, and although I read a couple of children’s books on the subject I didn’t feel they were reflective of my experience.

In one book I read the disabled brother died, and in another a girl was ashamed to invite friends over because of her disabled sister. The first book, while realistic, was too depressing, and the second felt dated. It had never occurred to me to feel nervous about introducing my friends to Jack. They had grown up around him and were used to him.

In both books the main characters were bullied because of their disabled siblings, but that has never happened to me. I might be more easily offended than others by certain words, but the thought of anyone specifically making fun of Jack seems absurd.

Being jealous

While I never felt that different from my friends, I could get really angry when I saw them fighting with their brothers and sisters.

Although I understand now that it’s completely normal, at the time I felt that they were not making the most of having an able-bodied sibling to talk to and play with.

I was jealous of them, but I was never particularly lonely or miserable because I could play with school friends or next-door neighbours. In many ways I feel that my childhood was better and richer than if I had been an only child.

Jack is healthy most of the time, and the few times he has been seriously ill I was either too young to understand or deliberately kept away from what was happening.

A different kind of family

My family often behave strangely because of Jack, and I don’t realise that we’re unusual until someone else is visiting and comments on it. We play mealtime word games to entertain him, often roping in guests and visiting relatives.

Jack has to be fed, so our lunch takes twice as long as usual so both he and the person feeding him can eat. Sometimes I’m forced to recite nursery rhymes and times tables at the dinner table for his entertainment, but if mild embarrassment in front of guests is the worst thing about my experience then I can’t really complain.

I’m uncomfortable whenever I tell people about Jack and they react with pity, because I feel like I’ve been luckier than most people in similar situations. Jack is happy and well, so the rest of us are happy too.

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

What Netbuddy did next – one year on

Last year, the popular online community, Netbuddy merged with Scope to help create our new online community. One year on, we asked former Netbuddies what they thought of Scope’s new community. Did we get it right?

Switching to something new is never easy, so we knew there may be some resistance to moving Netbuddy over to Scope. Sure enough, most former Netbuddies haven’t checked out the new community yet. Ouch! However, undeterred, we went to find out what we can do to encourage former Netbuddies to join.

What did people like most about Netbuddy?

It was easy to use, 73 per cent said. While just over half told us they found Netbuddy members helpful and supportive. We hope we’ve created a helpful environment on our new community and are working hard to make the site as easy to use as possible. If you’d like to meet some of the members, we now have a special welcome group for people to introduce themselves.

Many people liked the newsletter. We regular send emails about the online community and have now added the option to sign up to this, even if you don’t want to join the community. Just enter your email address and tick the online community box on our sign up form.

What you liked about Netbuddy

What did people use most at Netbuddy, we wanted to know? Not surprisingly, 72 per cent said the tips. After that, the forums came second at 35 per cent. 

What you used most at Netbuddy

What would encourage people to join the Scope community?

We asked people who hadn’t used the Scope community what issues they may have had and what we could do to encourage them to join. The overwhelming response (70 per cent) was that people hadn’t had the time. We understand how busy life can be, so we’ll continue to work hard at making our community easy to use and accessible on mobiles and tablets so it can be used anytime to fit in with hectic schedules.

Interestingly, 17 per cent told us they didn’t know Scope was for all disabled people and their families, offering support to people with learning disabilities as well as physical impairments. 34 per cent wanted to see more content about learning disabilities. We’re always looking at ways of increasing the topics covered on the forum. You may like to join our popular parents and carers group and our learning disabilities and autism group. We also have a number of community advisors with expertise in learning disabilities. If there’s a topic or question that you’d like covered, you can post on the community and we’ll do our best to find you the answer.

12 per cent said they liked and trusted Netbuddy. We like you too, which is why we’d love to see you on the new community!

Would any of these encourage you to join the new online community?

 

What do people want to see on the Scope community?

It was encouraging to hear that 86 per cent were interested in tips. Our tips enjoy pride of place on the new community, and we’ve added several new features which Netbuddy members suggested. Now, you can add comments to tips, thank people for suggestions and share them on social media.

Many said that they were interested in professional advice. We’re lucky to have most of the Netbuddy’s site experts on our new community as community advisors, they’re now joined by new advisors  including members of the wonderful Scope helpline, and of course our community champions who come from all walks of life.

Some of the things our new community has, which you’ve told us interest you

 

Thank you

So, thank you to all of you who took part in our survey – including Lucy Scott-Watson, who won our prize draw for £50 Amazon vouchers.

You’ve given us lots of great ideas for topics you’d like to see covered on the community and campaigns you’d like us to get involved with. We hope to see more of you joining the community in the coming year!

Join us on the new online community today! For more information about the survey please email community@scope.org.uk

Kill Me Now

Kill Me Now at the Park Theatre, London, is a play about Jake who has sacrificed his career as a writer to care for his disabled teenage son Joey.  It deals with a range of themes, including assisted suicide.

Here, Naomi Collett, who has a disabled teenage son herself, gives us her thoughts on the play.

As the mother of a seventeen year old severely disabled young man, I was very interested to see the play Kill Me Now, but ten seconds in and my heart was rapidly sinking. The son, a pubescent youth, was writhing naked in the bath and shouting that one of his classmates was a whore. Yes, apparently where there is a disabled child, there will also be behavioural problems.

A few minutes later the primary carer, his father, played by Greg Wise, lugs his son from the bath to the bare floor to change his nappy. Hello? Hoists anyone? Hygiene?! The actors were barely warming up and I was already worried I was going to be stuck watching a series of cliches for the next two hours, starting with the biggest bogeymen for the non disabled world: bad behaviour and double incontinence. I started to wonder also what the response would be of those in the audience who were not carers.

Non-disabled actors Greg Wise and Oliver Gomm acting a scene from Kill Me NowBut then the play moves on to perfectly depict the mad fish bowl world of carers in crisis as the father and his sister struggle to cope with a second terrible diagnosis against a mundane backdrop of managing jobs and household tasks. The play shows the gallows humour, the kindnesses alternating with flashes of anger as the pressures on the father and sister pile up.

It also deals with issues that I’m sure every carer for a child on the severe end of the spectrum is far too aware of: the social isolation, the lack of services, and the ever present fear of ill health and death of the carer and the future. These questions are handled beautifully, although painfully. The father begs his ex lover to visit his son, the ex lover winces and makes excuses. When the father is given his own diagnosis, his first thought is of his son. And the scene where the father and sister, overwhelmed and exhausted tell each other: “I love you,” was so poignant it brought tears to my eyes.

Greg Wise and Charlotte Harwood acting a scene from Kill Me NowTowards the end I was wondering again about the response of non carers in the audience. The subject of voluntary euthanasia had been discussed; did they see the protagonists’ dilemma as being a result of a problem which only happens to other people and which ultimately could be resolved by euthanasia? Or were they aware that their lives were so difficult, less because of the nature of their conditions and more because of the lack of support from friends, their community, and society?

Maybe the play could be considered a call to arms or at least a thought-provoking glimpse into the world of disability and caring. As the play finished to an (almost) standing ovation, the two women to my left picked up their coats and got ready to leave. “That Greg Wise is looking gorgeous” said one. Sadly, the signs are not promising….

Assisted suicide is a contentious issue for many disabled people and their families. Read why Scope is against legalising assisted suicide and see another view from the parent of a disabled child.

If you would like to chat to other parents and carers about any of the issues raised in the play, visit Scope’s online community.

I’m fed up of having to perform my disability

Guest blog by Lucy Britton, who is available to answer your questions and comments on our online community now. She would love to hear from you, so please do drop her a line!

This blog has now moved to our online community.

Join Lucy on our online community to talk about any of the issues raised, or similar experiences you’ve had.

I’m young, disabled and here’s my story

It’s National Storytelling week, so we’re highlighting some of the stories young disabled people have been telling us about their lives.

We recently invited a group of young disabled people to take part in a storytelling workshop, to encourage them to talk aboBrandon writing his storyut what’s happening in their lives and why things are important to them.

“Telling your story can be a great way to connect with other people and bring to life issues that affect you,” said Information Development Officer, Charles Clement. “It can let people know what you’re feeling, and that’s very important for some young disabled people, who may struggle to get themselves heard.”

The workshop, which was led by Advocreate, looked at what makes a good story, and why people should listen. It focused on the impact a personal story can have, and what captures people’s interest.

“If you want to get a wheelchair ramp installed at your local cafe, for example, you can either just ask for a ramp or you can tell the cafe a bit about yourself and why you need one,” Charles explained. “Telling your story is a far more powerful way of getting your point across.”

The young people taking part in the workshop had a range of impairments. Some were wheelchair users, others had autism and some had no speech, so the workshop explored different ways of telling a story, including film and writing.

“Giving young disabled people the skills to tell their own stories is very important,” said Charles. “It can increase their self esteem, reduce their feelings of isolation and help them cope with challenges in life.”

Brandon’s story

“Being bullied in class. People throw stuff at me. They pick on me. Say names. They swear at me and I feel angry, sad. Sometimes I stay quiet. Sometimes I react. I chuck stuff – my books – back and shout until a teacher comes. I wish I wasn’t bullied. Please think about what you’re doing and how you would feel if you got bullied.” 

Brandon is one of the young disabled people who took part in the storytelling workshop. He is 13 and has Global Development Delay, and has experienced bullying at school.

Brandon’s mum, Melanie said, “He has had an Brandon's story written on a piece of paperextremely hard time at school from day one, and he often comes home crying. He finds it very difficult to get his ideas across.

“The workshop was fantastic for him because he’s never felt confident talking about himself, yet by the end of the day he’d managed to tell his story for the first time. It really was quite a breakthrough.”

 

If you are a young disabled person and you would like to see your story on the Scope website, please send it to trendsetters@scope.org.uk. Here is a useful storytelling guide you can use.

We’re also publishing 100 stories from disabled people and their families in the run up to the general election as part of our 100 Days, 100 Stories campaign.