There are still people who believe disabled people shouldn’t be parents

Guest blog from Marie, who thought she may never have children because of her disability. After six years of waiting and exploring different options, Marie and her husband Dan became the proud parents of Mark in November. Thirty-one-year-old Marie has brittle bone disease, and in the words of her husband Dan, “could break her arm reaching for a kettle”. Marie’s brother died from the same genetic condition after falling from an unsuitable wheelchair. A wheelchair user herself and with a fused spine, having a baby was never going to be straight-forward for Marie.

Marie holding her baby Mark
Marie with her new baby Mark

When Dan and I first got together I was quite honest that I didn’t know if we could have children. Some women, even with my severity of brittle bones disease, can have a baby without a problem. But I have a severe spinal curvature and a heart condition as well, which means it would be dangerous for me to carry a baby to term.

We always said that we would adopt, but when we looked into adopting, we discovered they make it really hard if you’ve got a disability. I felt devastated. I thought that was it; we’re not going to be able to have children. But it was always at the back of my mind that we wanted a child. I even, at one point, thought about risking it and trying to carry a baby myself, but I knew it would have been too much for me.

It was a friend who suggested going to a surrogacy organisation. When we first went to talk to them I was worried; I thought they wouldn’t touch us because of the disability. But they were great! They didn’t give us any indication that it would be more difficult as a disabled person. I thought we would have to wait years and years for a surrogate to choose us, but we waited about 18 months.

Obviously there are things that have been and will be difficult. The surrogacy has been quite emotionally difficult for me. I feel guilty sometimes that someone else had to go through all the pain and sickness for us to have a baby.

Marie and Dan pushing Mark in a pram
Marie and Dan taking Mark for a stroll

I’m also anxious about what people might think. There are still people who believe disabled people shouldn’t be parents and we’ve had some really strange reactions from people. When Dan and I went to John Lewis to buy the cot, for example, they didn’t know what to do with us. They were like, “Is it for a friend?” They didn’t know what to do when we said it was for our baby. They were stood there staring at us for like 30 seconds.

There are so many things we don’t know as well, because we’re first time parents. We had a few sleepless nights, before Mark was born, worrying about things. We went on a First Aid course, so we know what to do if he’s choking or something. We’ve wanted a baby for a long time but it doesn’t quite prepare you. Your life changes so much.

Like all new mums, I’m exhausted, but having Mark in our lives is just so amazing. Dan and I are learning more about Mark and being parents everyday – it’s an adventure!

Marie is going to be blogging about being a new mum over the coming months, and has been raising awareness by talking to Sunday People

Brighton celebrates as Face 2 Face turns one

Guest post from Amanda Mortensen who is the Coordinator for Face 2 Face in Brighton and Hove.

Amanda cutting the cake
Cutting the cake!

We celebrated our first year in Brighton with a party last weekend. Twenty six families came together to celebrate with a special lunch, a fantastic inclusive drumming session, a messy art table and a sensory room. Families also got a special sensory goody bag to take away. 

We held the event at Scope’s day centre, The Sharon Collins centre, which was a brilliant venue with a sensory room, music room and lots of space to move around. Barry Kidner, the team coordinator there, has been really supportive and helped the day go brilliantly and Liam Synnott, service manager, came down to help which was very much appreciated.

The day was well attended by our befrienders and their families and children from six months to 16 years all had a great time. Families told us they really enjoyed the day and thought the venue was fantastic:

“Congratulations Face 2 Face, a great service for families,” 

“A fantastic day, all of us enjoyed it. A grand event, thanks.”

“Well done for making Face 2 Face a reality in Brighton,” 

Parents also talked about feeling isolated at the weekend and really appreciated a safe, stimulating environment in which to get together.

A great year for Face 2 Face in Brighton and Hove

Thanks to money raised by HealthWish through the Health Lottery, we’ve had a great year and are really looking forward to our second year. We’ve launched groups for children with Down syndrome, groups at the city’s special schools for children with profound and multiple learning difficulties, a group supporting children who are under the preschool special educational needs service and a group for dads. Our first dads’ group last week (in a pub, obviously) was with nine local dads and we hope to reach many more in the coming year. We also ran a really successful sleep workshop led by the charismatic Emma Sweet from Sleep Solutions. Parents are still talking about it on Facebook!

Next year, we will continue to look at new ways to support parents. We will continue to work closely in partnership with the local authority, which has proven really effective this year. Look out for a creative writing course (this will look at the parent journey, but you never know, we may discover the next JK Rowling). We will be also be training up a new team of befrienders to increase our ability to offer support to parents. Our current team are amazingly dedicated and several are now starting to lead our groups as well as offering vital one to one befriending.

Well done and thank you to everyone who has made the year a success!

Disability doesn’t have to be a barrier to starting your own business

Just four days until our event in London for disabled people who are thinking about setting up their own business, as well as entrepreneurs who have already taken the plunge. Book your free space today! Paul Carter who is speaking at the event explains why disability doesn’t have to be a barrier to starting your own business.

Paul CarterI founded my own media production company Little Man Media two years ago and haven’t looked back.

Leaving full-time employment was one of the best things I ever did, and now I want to show to other people – not just those with disabilities – that being your own boss needn’t be a pipedream, and is something that can change your life for the better.

Flexibility is far and away the biggest benefit of being your own boss. As a disabled person, the ability to be in control of your own time and your own commitments is really, really helpful and can often make the difference between a bad day and a good one.

One of the things I’m often asked is whether or not I’ve encountered any discrimination, prejudice or negative attitudes due to the fact that I’m disabled. For the most part the answer is no. Although there was one memorable occasion when applying for Access to Work funding (the government scheme that helps cover some disability-related costs in employment) when the assessor asked me how I could possibly operate a camera without hands, and that I should consider giving up and trying something “more suited to my condition.”

Such instances aside, I’ve not found that having a disability has been any form of hindrance or barrier, certainly not at least in terms of attracting new business, if anything it has helped open doors. A lot of my work has centred around equality issues and social justice, and being able to bring some lived experience or show that I have an understanding of or connection to my subject is something that people often find appealing.

There are considerable physical and societal barriers to getting disabled people into work so becoming your own boss might be the best option. But it’s not right for everyone and we certainly need more and better awareness among employers that disabled people aren’t going to cost loads of money or have a negative impact on the business – I think there’s still a long way to go there to change attitudes.

An often unaddressed issue is that disabled people’s conditions sometimes fluctuate, and a greater willingness to embrace flexible working would open so many more doors for disabled people, particularly those with mental health problems.

Nobody should be under the impression that running your own business is easy, it isn’t! You never truly switch off from the stresses and strains, and can’t leave work behind at 5pm when you shut down your computer and leave the office. I often find myself thinking about work last thing at night and first thing in the morning. Some people may find that thought unbearable or think it unhealthy, but if you truly love what you do and are passionate about your business, then it becomes an extension of yourself, and you’ll do whatever it takes to make it a success.

Having self-belief and being certain that you’re doing the right thing is absolutely critical, because there will undoubtedly be points where it looks and feels like everything is going against you, and you need to be able to pick yourself up and keep on going. But you need a bit of single-mindedness and the courage of your convictions, because running your own business is the best thing in the world. When you love what you do, it isn’t work. I get to spend my time meeting incredible people, telling amazing stories. Making films has allowed me to meet people who’ve spent time in foreign prisons, Paralympians, politicians, pop stars, and everyone in between. I’ve the best job in the world, and I wouldn’t swap it for anything.

Paul is speaking at a free event for disabled entrepreneurs and disabled people who are thinking of starting their own business in London on 13 February, organised by Natwest, Scope and Livability. 

Lifting the clouds of limitation: Emily’s story

Guest post from Emily Yates, a 22-year-old travel writer and presenter. Emily has Cerebral Palsy and is currently working on an accessible travel guide for the Olympic Games in Rio.

EmilyMy first experience of feeling truly unlimited, regardless of my disability, was during an expedition to southern Africa with the Journey of a Lifetime Trust (JoLt) at the age of 16.

Twenty-three other young people and myself rode elephants, climbed sand dunes and cage-dived with sharks – three things I definitely never thought I’d do, especially not with such ease and encouragement! The only way to describe it is that I felt free; there was no cotton wool, shocked faces or red tape to hold me back.

Quite naturally, from that point on I was addicted to travel, and obsessed by the thought of getting to as many places as I could, fighting against stereotypes and exceeding expectations each and every time. But I also wanted to do more than that; I wanted to place a positive, ‘can do’ image of the disabled community out there for all, both able and lesser able, to see.

My hope was that this would then clear the way for others who were considered, or considered themselves to be, disabled, to jump on the travel bandwagon and enjoy the ride.

Emily with Seb Coe
Emily with Seb Coe

I lived in the Sinai Desert with a Bedouin tribe, learned to scuba dive in the Red Sea, studied at the University of Melbourne, Australia, and took part in a scholarship trip to Sichuan University in Chengdu, China. But it was after an amazing two weeks of volunteering as a Games Maker at the London 2012 Paralympic Games that I was mentioned by Lord Sebastian Coe as somebody who had ‘lifted the clouds of limitation’ for those with disabilities.

It was then that I knew I must push myself further, and attempt to really make a difference in the world of adapted and accessible travel. I had enjoyed the positivity and the electric atmosphere of the Games so much, and was desperate to be involved in the next ones in Rio de Janeiro. It is an honour to say that I am now working in association with Rough Guides in order to write, publish and distribute an Accessible Travel Guide to Rio 2016, in order to provide information, guidance and encouragement to those who once considered themselves to be limited, and thought that travel wasn’t for them.

After lots of planning and networking, I traveled to Rio for the first time in November 2013, and was kindly hosted by the British Consulate. The city itself is an incredibly vibrant and exciting place and, although there are improvements to be made in terms of accessibility, projects of progression are already underway. I have never felt so welcome in a foreign environment before, and I cannot wait to see what is in store for 2016. I can guarantee that those who visit will really know how to celebrate after some time in Brazilian company!

I can’t deny that travel can be stressful, exhausting, and a ridiculous amount of hard work, especially if you are travelling with that ‘extra baggage’ of a condition that requires careful forward planning and a few special measures to be put in place. It is challenging, but it is not impossible. With accepting the possibility and opportunity of travel, you also immediately accept to experience some of the most exciting, fulfilling and life-affirming moments you will ever have. And hey, why should any of that ‘extra baggage’ that you might carry exclude you from grabbing a hold of that?!

You can follow Emily on Twitter and find out more about her work and adventures on her website.

Free fashion workshop for young disabled adults

Guest post from Katherine Sparkes of the Flamingo Foundation.

Clothes rail for young disabled people's fashion workshop

Looking good is a big part of feeling good. It’s important for all us, which is why the Flamingo Foundation has launched the Find my Style project, offering free personal styling sessions to young disabled adults.

The first session, which will be held in London on 10 February, will be led by fashion stylist and master image consultant Hannah Jean. Hannah will be working with the group to boost body confidence, help people find their own sense of style, and explore how items of clothing can be adapted to meet their needs.

She’ll also showcase some of the key styles for Spring/Summer 2014 and at the end, there will be a chance to try out some of the latest looks and take part in a fashion photo-shoot.
Hannah Jean
“Image and confidence in what we wear can make a huge difference, but young disabled people can feel removed from the fashion scene and find it difficult to find on-trend clothes that suit their style and their body,” says Hannah.

“This project is a fantastic way to open up the world of fashion and demonstrate that everyone can find or adapt clothes to show off their individuality and tastes.”

The first workshop will be geared towards ages 18-35, and will take place at The Pirate Castle, Oval Road, Camden, London NW1 7EA on 10 February, between 2-4pm If you’d like to take part, please email info@flamingofoundation.org to confirm your free place.

 

Can you survive 48 hours without digital?

A whole weekend with no Facebook, no phone, no tablet, nothing with a screen. That is exactly the challenge we set 20 Scope supporters back in November when introducing our brand new fundraising event Digital Detox. The event encourages our supporters to take up the challenge and experience just real analogue life, without the interference of technology.

In need of a detox was John Doree who pledged to go without tech for 48 hours and to re-engage with the offline side of life.

The tech-y way of life

No digital for 48 hours. No smart phones. No internet. Have a good old fashioned weekend.

When I first saw the Digital Detox challenge email I thought I’d give it a go. It’s my first bit of active participation in a Scope event and I was eager to do something and Digital Detox seemed a really good fit. I use my phone quite a bit for internet and a bit of social network stuff, but on the whole my phone usage pales in comparison to my use of other gadgets and gizmos. I listen to my MP3 player almost constantly on headphones, read using a Kindle, play games on a laptop, write music using said laptop and a host of other noise-making bits of hardware.
Despite all those bits of technology, on a personal level I thought just giving up one device wouldn’t be enough. The idea of dropping as much technology as I could for 48 hours was one that I thought would be a real challenge. It turned out to be much harder in reality.

My friends thought it would be a real nightmare for me, they’ve known me as the tech-obsessed geek with a penchant for software development and creating electronic music, so the thought of me ditching it all for a weekend was an amusing one. I think this was reflected in the generous donations that found their way to my Just Giving page and I was all too happy to give people a dread-filled commentary on Facebook in the run-up to the big switch-off. There were some last-ditch efforts to ensure I wouldn’t be completely scuppered over the weekend, I got some money out as I was including Cashpoints as accessible technology, then I just about remembered to switch my alarms off and that was it.

How many times do you check your phone?

The urge to check my phone was overwhelming, it was quite saddening at times to realise how much I instinctively reach for it when I’m doing even the most innocuous things like waiting for the kettle to boil. No Saturday morning TV either. There’s never anything on but there’s usually something recorded from the week on the Sky box, but no, this wasn’t allowed either. No music player or CD player in the living room. Right, OK then.

My other half had left for the day to catch up with her friends so I was left on my own. What was I going to do? I had a bath and hung up the washing. I did the washing up and changed the sheets. I took down the rubbish and recycling. I finished all these things and thought, now what? Read a book? So I read a book and promptly had a nap. The flat was so quiet and even our typically noisy neighbours were evidently also taking the weekend off their favourite activity of banging on the walls. Time just seemed to stretch before me and midnight Sunday evening was now a very distant prospect. Our plan for the evening was to go to a friend’s birthday in Camden and so I was relieved of my self-imposed analogue nightmare.

A virtual power cut

Sunday was a little more difficult, not just for me but for my now-suffering partner. My Digital Detox was now threatening her own activities, she felt guilty about turning the TV on or playing around on her phone and so left them alone in favour of the two of us just sitting around and having a chat. As much as we both wanted to laze around in front of the TV on a Sunday afternoon, in the end we found just sitting around nattering away for several hours was just as enjoyable.

By the time I went to bed on the Sunday evening I found I wasn’t missing technology as much as I thought I would. I was certainly looking forward to catching up on emails and continuing reading some trashy novel on the Kindle, but the predicted binge of technology on the Monday evening never came to pass.

So much is taken for granted and I felt that simply giving up my phone alone wasn’t enough.

The Just Giving page set up by the events team included the following bit of text:

“The money raised through Scope’s Digital Detox could help provide an iPad and accessories, so a student with limited verbal communication can interact in a way they have never done before – using equipment they can control themselves.”

This really resonated with me so I thought to draw a parallel between the cause and the challenge itself by trying to severely reduce my access to as much technology as possible. In the end it was fun, and a considerable challenge but it was an event that showed me how immediately accessible a lot of technology is these days.

Digital Detox will be returning for the first weekend in March. Sign up for your own 48 hour detox and pledge to embrace your inner analogue. For more information on how to sign-up to ‘go dark’ for a weekend of good old-fashioned fun check out the website or phone 020 7619 7270. To meet previous detoxers find us on Facebook and Twitter.

Amanda’s story: Caring for a disabled child and supporting other parents

Guest post from Becky, who works in Scope’s fundraising department.

Being based in Scope’s office in London, it’s easy to become detached from the day-to-day reality of what life is like for disabled people and their families.

AmandaAmanda and her husband Neil found their lives changed forever when their daughter Livvy was diagnosed with autism and severe learning difficulties at 22 months. A freelance journalist at the time, Amanda had to change direction and, in her own words, she was given “a new path”.

Amanda now works part-time for Scope as the Coordinator for Face 2 Face in Brighton and Hove.

When we sit down in her living room and start chatting I am immediately struck by Amanda’s resilient character. As well as Livvy, now 13, Amanda has three other children aged three to 11, works for Scope and is a governor at two of her children’s schools.

But despite her obvious strength, I’ve no doubt that things must have been very difficult for Amanda at times.

Livvy developed epilepsy aged five and has tonic seizures every day which Amanda says are “really horrible”. This means that Amanda and Neil have to monitor Livvy during the night, taking turns to care for her.

Recently Livvy has had to spend more and more time in a wheelchair, and has lost some of her communication skills. But it is the spontaneity of Livvy’s seizures which seem to have the biggest effect on Amanda, and it is the only time during our meeting that I can sense any vulnerability in her.

Family holidays are out of the question as it would be too overwhelming for them to take Livvy away overnight. Amanda tells me that she would be really nervous about something happening, and so they use some of the time Livvy spends in their local hospice, Chestnut Tree House, as a safe holiday instead, with the family going along to stay with her.

Amanda says that getting support for Livvy from her local authority has not been difficult, because Livvy is so severely disabled. But this is not the case for a lot of the parents she meets – many of whom are struggling with the system, and have to fight for everything.

Amanda is a powerful spokeswoman for these parents – definitely someone I would want to have on my side if I was a parent of a newly-diagnosed disabled child.

When I leave the family’s house I feel uplifted by Amanda’s story. Her outlook on life and appetite to achieve positive change for disabled people reminds me why I chose to work for Scope.

“It’s like baby steps, one step after another” – Michael’s story

Landing your first “proper” job is tough for many young people in the UK. For 19-year-old Michael, having a learning disability has made that challenge all the harder. After a disrupted education, the East Londoner left school without his GCSEs and with his confidence badly dented. But everything started to change for Michael when Scope’s First Impressions, First Experiences programme set him up with a work placement at London Overground. 

Michael's face, smiling
Scope’s First Impressions, First Experiences programme gave Michael the confidence to begin his dream career.

When I was in school my confidence was knocked. I was diagnosed with my condition in year eight. I was diagnosed because I had problems with my attendance. My mum thought I might have a bit of a learning disability because she works with kids herself. The day I was diagnosed with autism I felt a whole lot of relief.

I thought that without many skills and GCSEs it wasn’t going to be worth applying for things like apprenticeships. I thought I had no chance. Before I came to Scope I thought to myself I wasn’t going to get anywhere. But from day one at the course things started to look better.

When I first started the course, I was down in general and didn’t have much self-confidence. I couldn’t see how I’d get to where I wanted to be. I’ve always had a passion for transport, and working on buses was my dream job.

Getting my first work experience 

First thing in 2013 I got the news that London Overground wanted me – brilliant. When I started with London Overground at the end of January, things picked up a lot more.

The Scope course dramatically improved my confidence and filled that gap that was holding me back. It gave me the chance to do work experience with London Overground, where I helped and assisted passengers with tickets and travel enquiries at Surrey Quays station. This work experience helped me to think “I can do this” and gave me a more positive outlook on life.

Now, I’m working part time at Stagecoach as a Customer Assistant on the number 15 bus route from Tower Hill to Trafalgar Square. I check tickets, offer travel advice to customers, supervise the platform and assist passengers with getting on and off the bus safely. I really love my job and I’m hoping that it will help me to achieve my dream of becoming a bus driver. Without First Impressions, First Experiences, I don’t think I’d be here.

A new outlook on life

I’ve always got a smile on my face and I’m cheery with customers. When they see that, they are more likely to have a chance of being a bit happier. Even a “good morning” or a “hello” makes someone feel a bit cheered up.

It’s like baby steps, one step after another. One step at a time is always the best policy and disabled people should be entitled to work no matter if it’s in an office or what.

When it comes down to it, go for it, no matter what way you take, you are going to get where you want to be.

Find out more about the First Impressions, First Experiences work training.

The Access to Elected Office Fund – changing the world one political appointment at time

Today Minister for Women and Equalities Helen Grant announced that the fund will continue for another year, and be extended.

Helen nailed the central issue and reason it was created in the first place when she said: “Disabled candidates can often be faced with additional costs that make standing for election more difficult than their non-disabled counterparts.”

The fund also “creates the space for disabled people to play a key role in these decision-making processes, but can also lead to increased visibility in public life, and ultimately change attitudes towards disability” according to Scope chair Alice Maynard.

In the run up to the 2010 election the Conservative party manifesto committed to “introduce a £1 million fund to help disabled people who want to become MPs, councillors or other elected officials with the extra costs they face in running for office”.

The fund idea was then reflected in the coalition agreement after the election.

Since the fund was launched in July 2012 there have been over sixty applications to the fund, which will now also cover Parish and Town Council elections.

The Local Government Association Be a councilor campaign is also being expanded and will now help aspiring disabled candidates by providing coaching, mentoring and training, to help build their confidence, knowledge and skills.

Everyone involved deserves a huge amount of credit, for recognising the potential disabled people have, and the benefits they can bring to our communities and political life. Crucially that is being backed up with money, time and commitment, particularly at a time the public purse is under pressure.

Disabled people are still massively under-represented in public life, but here’s hoping that more people take the plunge and use to its full potential.

In you’re interested you can apply on the Access to Elected Office Fund website.

Haylee’s friends

A guest blog from Emma, author of Haylee’s friends, a new story book for young disabled children.

Haylee's friends ebook cover

About a year ago my daughter, Molly, became aware her left hand didn’t always do the things she wanted it to do. Sometimes she got quite cross with it when it was uncooperative. It has a habit of going off at an unhelpful angle which is awkward for her and gets in the way.

Molly’s frustration prompted me to look for some books to help explain in simple terms what cerebral palsy is. Unfortunately, there wasn’t anything that was child friendly or presented cerebral palsy in a positive way.

After some encouragement from friends, and of course motivated by Molly’s questions, I contacted Scope to see if they had any story books to help Molly understand. As our conversations went on I asked if they would help me write a book to answer these questions, they agreed.

Getting started

I arranged to meet one of the Scope team at the Kidz up North exhibition 2012 to discuss our ideas. Whilst at the exhibition I bumped into Molly’s occupational therapist Michelle and we got chatting about what I was doing at the exhibition.

A couple of days later Michelle emailed me offering to write the book with us, and so the project started. Michelle had never written a children’s story before but it was on her “one day I would like to do” list, all she needed was some inspiration! After a few luxury hot chocolate meetings, the story started to take shape.

Michelle spoke with speech and language and physiotherapy colleagues to hear what they would like to have included in the story. She also met up with a family that she has been involved with for a number of years and asked both the parents and the older child with cerebral palsy, “if this book had been around when you/your child started school, what would you have wanted it to say?”

The answers were to provide the central theme of the story.

“Never say it is all going to be okay, because it isn’t. But if you do your exercises and wear your splints, it can make things a lot easier”. And “however hard it is and however much you don’t want to, always answer your child’s questions truthfully”.

Molly’s help

Throughout the process of developing the story, Molly insisted on being part of it, giving us lots of inspirational ideas and letting us know if she didn’t like something. She vetoed some of the illustrations, like the original pictures of Lilly, the walker, which were met with a very disapproving face from Molly! She also gave us suggestions of what to include, like using her fork and knife and helping to name the characters. Most importantly, she wanted our family dog to be the model for Toby in the illustrations.

Now Haylee’s Friends is published Molly is our best advocate for it. She loves sharing it with anybody willing to sit down with her. Visitors to the family home this summer have all benefitted from Molly sharing “her” book with them and her school friends have commented that “it tells you the things that help Haylee” and “I like the bit when the lead gets tangled up.”

The story has really helped Molly to understand why her body behaves like it does and it has helped her to share this new understanding with the people she meets. Now we hope that Haylee’s Friends helps other children, their families and friends in the way it has helped Molly. Already it is making its way into primary schools in the Harrogate District, it has been shared at Portage training sessions and is appearing in Children’s Centres, Child Development Centres and libraries.

We are all so excited and we hope to have a celebration and launch somewhere local to where it was written and where the hot chocolate was drunk very soon.

A limited number of hard copies are available. If you would like a copy please call 02920 815 452 or email training@scope.org.uk. You can also buy it as an ebook on Amazon.