Author with Down’s Syndrome talks about his first book

Marcus Sikora, who is 25, has just published his first book for children: Black Day: The Monster Rock Band. We caught up with Marcus and his mother, Mardra who collaborated with him on the project, to find out more.

Brad is a paper boy who wants to be a rock star, so when he discovers the band Black Day playing in old Professor Hammer’s garage, he really wants to join. But the band’s monsters have a different idea and send him away, “No humans!” Brad sets out to change their minds…

That’s the story line behind Black Day, an illustrated children’s book brought to life by 25-year-old Marcus and his mother, Mardra, after Marcus started imagining himself as the lead singer of a monster band.book cover with website

“It started with the band,” Marcus explains.

“Years ago Marcus had a band in mind for himself called Gold Day,” says Mardra. “When he started talking about a band of monsters, who all lived in a house together, I asked him – ‘What’s the name of that band?’ and he said, ‘Black Day.’ I thought that was a perfect name!

Marcus and Mardra have been writing together for some time, setting Sundays aside to come up with new ideas for stories. But there was something about Black Day that kept bringing them back to it. “I knew there were some really great gems in this idea,” Mardra explains. “And more kept showing up as it developed.”

Working closely with the book’s illustrator, Noah Witchell, Marcus and Mardra spent over a year developing Black Day.  “Me and Mardra wrote the story,” says Marcus. “We all worked together. Noah and my drawings, then he animated himself.”

Mardra points out that everyone involved in the project followed Marcus’ lead. “It started with his great imaginative story, and Noah made sure to keep Marcus’ vision of the story and characters as a top priority,” she says.

Many of the characters in Black Day are based on people in Marcus’ own life. “I got Frankenstein based on Quinn (my dad), the drummer,” he says. “Brad also, Quinn’s best friend. And I’m the singer.

Peeking“Skeleton Pumpkin Head is my favourite. And my favorite part is, ‘This kid has a one track mind’.”

Skeleton Pumpkin Head is Marcus’ alter-ego, Mardra explains. “As with any story-teller, I can see Marcus in every character, but Skeleton Pumpkin Head is the one he identifies with the most.

Asked how he found the writing process, Marcus says, “Fast. Not hard.” Publishing is not for the faint of heart, but Marcus says it was worth all the hard work. “I love it when the people love the book so much. A lot!” he exclaims. He already has plans for a sequal. “Black Day Two through Five,” he says.

To celebrate Down’s Syndrome Awareness Week (20-26 March) we will be giving away a free copy of Black Day: The Monster Rock Band on our Twitter and Facebook. To enter, simply look out for the post and comment! 

(The prize draw closes on 26 March at 10am. The winners will be chosen at random after this date and notified via social media. Books can only be posted to addresses in the UK and no cash equivalent or alternative prizes will be offered. This prize draw is not associated with Facebook or Twitter).

 

Welfare Reform and Work Bill: what happened and what’s next?

For the last seven months we have been working to influence the Welfare Reform and Work Bill since it was announced in the Queen’s Speech.

This week, the process of debating the Bill in both Houses of Parliament finished, and it will shortly receive Royal Assent. What will the finished Bill mean for disabled people and their families?

The Bill aims to achieve the Government’s manifesto commitment of ‘full employment‘.

As part of their plans to do so, the Government committed to halving the disability employment gap, following on from a Scope campaign.

Scope focused on ensuring that measures within this Bill supported more disabled people to find, stay and progress in work.

As the Bill went through Parliament, two key areas of focus were:

  • Calling on the Government to include a requirement in the Bill to report annually on the progress it makes towards halving the disability employment gap.
  • Opposing the reduction in financial support the Bill proposed for disabled people in the Employment and Support Work Related Activity Group (ESA WRAG).

Halving the employment gap

The Bill requires the Government to report annually to Parliament on the progress it is making towards full employment. We argued that the Government should also have to report each year on the progress it makes towards halving the disability employment gap, and this should be specifically included in the Bill.

In the House of Commons MPs tabled amendments (a proposed change), setting out this requirement and what the report should include. Once the Bill reached the House of Lords, Baroness Jane Campbell also tabled an amendment that was supported by Peers from across the House.

While the amendment was not accepted, Government Minister Lord Freud, made a ‘no ifs, no buts’ commitment that the annual report on full employment would contain a report on halving the disability employment gap.

Although we would have liked to see this commitment in legislation, this is an important commitment. Now we would like to hear more detail from the Government on what this report will contain, and we are meeting Ministers to discuss this further.

A reduction in ESA WRAG

The Bill proposed a £30 week reduction in support to new claimants of ESA WRAG from April 2017. The Government’s own impact assessment found this would be around half a million people.

We are really concerned about this change and think that will push disabled people further away from work.

Alongside other charities we supported three independent cross bench Peers to carry out a review into the impact this change would have. It found that the proposed cut to ESA WRAG would make it much harder for people in this group to find work.

When the Bill was in the House of Lords, we supported amendments by Lord Low, one of the Peers who led the Review, to remove this section from the Bill. The amendment was passed by the Lords and the Government defeated.

Changes to the Bill have to be passed by both Houses in a period called ‘Ping Pong’, with MPs having the final say. MPs voted to overturn the Lords changes but MPs from all parties spoke out in opposition to the change.

The House of Lords then passed a further amendment which would require the Government to carry out an impact assessment before these changes were introduced. Despite opposition from charities and many MPs this was also defeated by  the House of Commons. Lord Low described this as a ‘black day for disabled people’ .

We are disappointed that this will soon be law and that from April next year new ESA WRAG claimants will receive the same level of financial support as people on JSA. Cutting financial support is not an answer to halving the disability employment gap.

A vital opportunity to reform the system

Throughout the debate MPs, Peers and Government Ministers spoke about the upcoming White Paper on disability, health and employment which the Government has said will reform support for disabled people to further reduce the disability employment gap.

This is a crucial moment and it we hope that it might include reform of the Work Capability Assessment and set out new details on specialist employment support to address the structural barriers to work disabled people face.

This is a vital opportunity to reform the system to make it work for disabled people which must not be missed.

Read more blogs from our policy team

Get involved in Disabled Access Day

Disabled Access Day (On March 12) is all about visiting somewhere you’ve never been before whether that’s a coffee shop, cinema, sports centre or anywhere else.

In this blog post, Lauren from Disabled Access Day tells us about the great venues getting venues taking part and how you can get involved. 

Venues across the UK are taking part from the Eden Project in Cornwall to the Orkney Story Telling Centre in the Orkney Islands.

So far we have over 260 independent venues taking part, and more signing up each day. There are so many exciting events, activities and offers happening on 12 March we reckon it will be hard to choose what to do!

CafeNero

What’s Disabled Access Day all about?

It’s about creating opportunities for disabled people to try something new in an atmosphere of cooperation, safety and fun and we hope that many people across the UK will join us and share their experiences.

We’re pleased to see that so many venues have taken up the opportunity to get involved in the day and showcase their accessibility, welcome new people to their venue or try out something new themselves.

While we wish that every day was disabled access day, we recognise that for now that’s not the case. However, there are lots of venues across the UK that have great accessibility, who want to try new activities, receive open and honest feedback and engage with new customers.

So what’s going on?

Take a look at just some of the exciting activities going on across the country on Disabled Access Day below:

ThamesClippers

If you’re in London

There are forty events going on across the Capital so you won’t be short on a thing or two to do on the day! Head over to the Houses of Parliament, who will be offering a BSL interpreted guided tour of the historic building, and will also have a pop-up shop where visitors can learn more about their accessible tours.

More of a theatre fan? The Lyric Hammersmith will be staging an audio described and a captioned performance of their experimental version of Shakespeare’s classic ‘A Midsummer Night’s Dream’. Plus, a whole range of workshops will be run on the day from a sensory session to a dance workshop – you’ll be sure to have a great time!

If you’re in Edinburgh

With almost thirty different events happening in Edinburgh there will be plenty going on to keep you busy! If you fancy a walk on the wild side, Edinburgh Zoo’s knowledgeable team will be holding BSL interpreted animal talks throughout the day – and make sure that you check out the famous penguin parade at 2.15pm!

Not an animal lover? Head over to The National Museum of Scotland, who will be offering hands-on tours for visually impaired visitors, with an opportunity to touch objects from their collection.

If you’re in Leeds

Join Leeds City Council at the Leeds City Museum where there are a whole host of events going on, from touch tours of the galleries to try it out sports sessions to craft activities – there’s sure to be something for everyone.

If you’re more of a nature lover then head to Tropical World, who are offering free early entry between 9am and 10am, so that you can explore the attraction in a relaxed environment before the crowds arrive (booking essential).

If you’re in Newcastle

Try out the Life Science Centre in Newcastle, who will be offering 50% off tickets. The centre is interactive and hands-on, and aims to make science fun for all ages! If you have kids taking part in the day, how about heading to Seven Stories, National Centre for Children’s Books, where they will be offering early bird entry to the exhibitions and café, and holding multi-sensory Story Time sessions throughout the day.

DAD balloon hat

What else is happening?

But that’s not all that’s happening on 12 March, there are lots more activities, events and offers across the country.

We are also working with Strada, Barclays, John Lewis and Caffè Nero with selected stores nationwide getting involved in the day too, offering promotions and activities on 12 March.

So the big question is what will you be doing on Disabled Access Day 2016? Stay up to date with all the developments on the run up to 12 March by signing up to our newsletter, following us Twitter and liking us on Facebook and make sure you’ll let us know what you’ll be getting up to – we love to hear people’s plans!

Find out what’s on near you on the Disabled Access Day website

Let’s make sure disabled women’s voices are heard

Rebekka is 21 years old, studied history at Oxford University and is co-founder of Disabled Survivors Unite. She has epilepsy and set up the first disability awareness week there. She’s particularly interested in issues that affect disabled women.

Disabled women are twice as likely to experience domestic abuse

They also experience abuse for longer but it’s something that isn’t picked up on very much. We need to expand how we view domestic abuse and acknowledge that there are different forms of violence and that they affect disabled women differently.

This issue has been left out of lots of mainstream disability campaigning because the focus has been on obtaining rights, which is understandable, but at the same time they don’t address specific issues faced by disabled women. I also think that services need to be more tailored to disabled women. For example, if they need to be re-housed, there are limited places that are accessible.

Rebekka in conversation with another female campaigner at an event

There’s a general lack of awareness

I think Disabled women’s issues are rarely represented in film, television and the media. If they are you have to go quite out of your way to find it.

I’ve seen a lot of domestic abuse helpline ads and none of them have specifically addressed disabled women and they’re not addressing accessibility issues.

Considering how difficult it is to seek help if you’re a domestic abuse victim, it’s even harder if you’re a disabled woman.

Making sure disabled women’s voices are heard

Disabled women are often neglected both within the disability and feminist movements. I’ve done a lot of work with the feminist campaign at Oxford to make sure they’re more accessible and are realising the issues faced by disabled women particularly.

I set up the first disability awareness week at Oxford and it’s now an annual thing. Every time we do it we make sure there are specific events tailored towards women. We’ve done things like how reproductive rights affect women, especially disabled women, and how that differs; I’ve done workshops on disabled women and domestic violence – and lots of other things!

Change is possible

We’ve really changed how the feminist campaign at Oxford has viewed disability and put it on their radar, especially in terms of accessibility. Now it’s probably the most accessible campaign, other than the disability campaign.

It’s not that people want to be inaccessible; they’re just not thinking about it. It’s really important to make sure disabled women are able to get involved in feminist campaigns and that their experiences are brought to light. By opening that dialogue we’ve really made a difference.

Rebekka smiles at the camera

Rebekka is a young campaigner on our Scope for Change training programme – which is equipping a group of young disabled people to be the campaigners of the future. To find out more about campaigns, visit our website.

“I want him to have the childhood that I never had”

In November 2013, Marie and her husband Dan became the proud parents of Mark via a surrogate. Marie has brittle bone disease and uses a wheelchair, so aspects of being a mum can be challenging. As Mother’s Day approaches, Marie tells us how Mark is growing up. 

Well, what can I say? Mark is now two years and three months old and we simply do not know where that time has gone.Mark plays with a sponge football

It’s a cliché to say ‘They grow up so fast’, but they really do! We are having so much fun and Mark has an amazing social life. He attends ‘Stay and Play’, ‘Mini Strikers’ and ‘Rugby Tots’ twice a week. ‘Rugby Tots’ has a Saturday session so daddy can come along too.

We have been out and about so much that I have recently had to have new tyres and motors on my powerchair. 1200 miles of mostly outdoor wheeling in a year will do that!

I’m enjoying everything about being a mum and I especially love being able to drive Mark to all his children centre activities in my adapted van. People stare and seem amazed when they see you are a disabled mum but when they see you driving your son around in a VW Caravelle with controls that look like they came from a games console, there are even more amazed looks!

I’m so grateful for the Motability scheme. The independence it gives me to enable me to take my son places like any other parent is what the scheme is all about.

He doesn’t see me any differently

Mark is getting even bigger and stronger and the challenges of being a small brittle mum are constantly changing. Mark (like any other adventurous toddler) likes to climb and jump so we need to be careful as there is a risk of him hurting me. Mark is now getting to the age where he understands that mummy could get hurt and so knows that daddy is who you go to for rough and tumble!

Mark running and smiling on the beach

I do really miss being able to physically pick him up but we still sit next to each other and cuddle on the sofa for story time before bed. We also love to hold hands and watch Peppa Pig together (Mark’s favourite!)

Now that Mark is walking and running independently, some things are a lot easier. He can walk over to me and climb up to my wheelchair when he wants a kiss or wants to see me. He’s even started passing me a cushion before I am about to climb onto the sofa as he knows I use one to transfer.

He doesn’t see me any differently. I’m just mum and he likes being helpful. He has an obsession at the moment with making sure daddy wears his slippers around the house!

Remembering my mum

Mother’s day is fast approaching and some days I still have to pinch myself to realise this is still real, that I’m a mum and we have a beautiful son. My only wish is that my own mother could have lived to see him. She sadly passed away a year before he was born but I’m proud to say she knew our plans and was as excited as we were. I know that she is looking down on us and I would like to use this blog to honour her and thank her for everything she did for me. Without her I wouldn’t be where I am now or have the knowledge I have to be a mum myself.

Marie with her mum

Hopes and fears for the future

Like any mum I have my fears and hopes for my child’s future. I think because of my own brittle bones I am always afraid of Mark getting hurt.

My biggest fear is him falling off a bike or out of a tree when he is older and him getting a fracture himself (even though he doesn’t share my condition). I fear this for him because I know how much it hurts and never want him to experience it! At the same time, I know I would be the best person to help him through it.

My hopes for his future are that he will always be happy. I want him to have the childhood that I never had. Already he does so much for a two year old I know that we will succeed in making his childhood the best it possibly can be. Every day he’s doing something from football to visiting the zoo. My other hope for him is that one day we will be blessed again with a second child so he can be a big brother.

Marie, Dan and Mark enjoy lunch at a restaurant by the sea

Scope’s online community has loads of tips for parents and families. Visit our tips pages and get involved.

What it’s like being disabled and dating online

Lizzy is a 21 year-old who volunteers at a Barnardos project in Bristol, helping children and young people who have experience of health services. She’s been disabled since she was 14, and like many people uses online dating apps like Tinder. In this blog Lizzy shares her experience of online dating. 

I used Tinder for a year or so, and didn’t mention in the description, nor showed in the photos, that I had a disability.

It was something I had thought a lot about: do I tell them or not?

So, I didn’t. Not until we were a little way into talking at least. This received mixed reviews. Some people were completely cool with it. Some people responded with ‘oh my friend’s sister has that’, some asked ‘but can you still have sex though?’ (to which I loved to answer with ‘yes thank you, can you?’).

Some didn’t know what my disability was, and asked questions, and some people stopped talking to me. I was cool with all of those responses.

It left me thinking though, how interesting it would be to have two accounts, one not showing the disability at all, and the other being real about it.

Creating two profiles

I wondered how different the responses would be. Whether it was better for them to see me for who I am, and how I like to dress and look, before seeing me with my disability. Or was it better to be completely open and honest about things?

This lead me to create an account on Plenty Of Fish, where I decided that was what I would do – be honest. I still didn’t show my illness in my photos – instead I showed my smile, which represents me far more than my disability.

However in the bio on my profile, I did write that I have a chronic illness, and that I often need a wheelchair to get about.

Breaking the ice

Underneath that, I cracked a joke, about how it’s a win-win situation, because they wouldn’t have to pay for the gym, they could push me around instead, and me being sat down gives them a good view down my top.

I know that wouldn’t be to everyone’s approval, but I like to insert humour into potentially awkward situations – it breaks the ice.

Being honest about it left me feeling much more settled. As the messages started appearing in my inbox, I felt calm knowing that I’d already put it out there. Calm knowing that if they chose to talk to me, they’d chosen to talk to me knowing the situation; they weren’t walking into this with their eyes closed.

I had so many people comment about how they loved my humour and my easy going view towards my disability, and it made them feel much more at ease.

Some asked questions, they were polite, and genuinely interested. Lots of people were totally fine with the fact I need a wheelchair, and didn’t seem phased by it at all. Others weren’t so keen being seen out with me using it.

Then there was the added stress, of going on a date and getting there without having my carer come in with me.

Good and bad dates

My parents were understandably protective of me, because I was their youngest child, and due to my illness hadn’t had the ‘normal’ experiences of someone my age.  But I wasn’t naive. I knew how to meet people in the safest possible way, I needed to learn, to have good dates and bad dates, to enjoy myself and make mistakes, like everyone in their early 20’s.

I wanted to experience life, and though its true I need so much care and support, I also wanted to break away from that a little and find my own path in dating.

In my opinion, it needs to be discussed more. I’ve had so many questions in my head about what I should or shouldn’t do. And when I ask friends, some say they didn’t know much about it, and had never come across disability in dating before.

Too often people assume that disabled people don’t have fulfilling sex lives and relationships. Nothing could be further from the truth. Read Scope’s A-Z of sex and disability to find out more.