All posts by Hayley Tomkinson

I'm in the Stories team at Scope.

I’m just like any other mum – disability doesn’t change anything!

Marie and her husband Dan are the proud parents of Mark, who’s three years old. Marie has brittle bone disease and uses a wheelchair, so aspects of being a mum can be challenging. To mark Mother’s Day, Marie updates us on their past year –  Mark has been coming on in leaps and bounds, and there have been changes for Marie and Dan too.

Mark has my independent streak

Mark has stopped being a toddler and is most definitely now a fantastic, handsome and intelligent little boy. He has absorbed my fierce independent streak and most household tasks now echo with ‘No, Marky do it!’ in his own special little voice. His increased independence makes life easier physically – all the jobs I couldn’t do like picking him up are now in the past – but we have new challenges, how DO you discipline your toddler when he’s your own height? It’s a good job I can still shout and hold the purse strings!

One of his favourite things (at the moment!) is cooking, and this is where our fantastic adapted kitchen comes in; it means I can cook for the whole family and Mark can get involved too. He loves making gingerbread men! We designed the kitchen ourselves with a number of clever adaptations using standard materials to make it as cheap as possible – things like using wall units as low-level cupboards to give my chair room to fit underneath. It’s amazing how a few simple bits of lateral thinking make all the difference!

While the more sedate things are mummy jobs, the active things are daddy’s domain. Mark recently started swimming, something that he can do with Dan while I watch. I can swim (I’ve been known to flap about and propel myself up to 800 metres, although I won’t break any records!) but the idea of going in a bustling, busy public pool with Brittle Bones doesn’t sound too smart. I leave that one to the boys.

Marie and her 3 year old son Mark sat at table

Returning to work

And Mark definitely is a boy now, we registered him in our local preschool for 3 mornings a week starting back in January – the start of his funded time. He adores it! Whilst we’ve always had him out and about doing things (Start the Art, Mini Strikers, Rugby Tots to name but a few) since he was about 6 months old, he really has responded well to the structure of preschool. The loving and nurturing home we have created for him has worked, he’s ahead of his age targets across the board.

Mark now being at preschool has left a hole in my life, and I’m never one to sit still doing nothing. I’d get bored too fast. So, I decided to use my degree (First-class BSc in a number of subjects including Social Policy and Child Development) and my long experience in the health and social care field as both a recipient and worker to get a job where I can really make a difference. Such an opportunity arose and I’m proud to say I am now a college tutor, tutoring a wide range of courses. It’s brilliant! I get to bring a unique view to the table, helping students (e.g. care practitioners) see the wider issues at play beyond just learning the course. I hope they are learning a lot! Mark can also see me earning (as he puts it) ‘pennies for rides!’. I guess that returning to work as your child gets older is just another one of them milestones and I see myself as just like any other mum despite the 200+ broken bones, life-saving surgery as a teenager, the fact that I’m fully wheelchair dependent and have daily chronic aches and pains from years of physical trauma.

Dan has a new job too. Sadly he was made redundant following a very successful career in space research – he was one of the team who landed a spacecraft on a comet in late 2014. Google ‘Dan Andrews Rosetta’ if you want to read more! Sadly the end of the mission meant an end to the funding, and he lost his job. That was, naturally, a worrying time for us all. Not only was he job-hunting – he needed a company within a short commute distance to tie in with family, with normal office hours and that would recognise his transferable skills. He struck gold and is now working in the fascinating field of special missions aviation. Mark should have fun telling his school friends about what Daddy’s done for a living!

Marie holding a tray of gingerbread men while Mark sprinkles on flour

Remembering my own mum

So that’s it from us. A year of changes for us all and a lot of adventures! We like to think we’re giving Mark the best upbringing we possibly can. He’s always doing things and he most definitely doesn’t see me as anything other than ‘Mum’! It is still hard doing this without my own mum, there are countless times when I want to just call her and ask ‘What do I do if he…?’ or to share the latest milestone met. Readers who read my last blog will know that she passed away very suddenly in 2012 and this will be another emotional Mother’s Day for me. As well as all my other health conditions I am now also battling prolonged grief disorder but I am using my strength to ensure I am making each day count and living life to the full with my lovely little family. All I can say is that my upbringing from her definitely stuck, I wouldn’t be the fiercely independent working mum and wife that I am today without her teaching me that my disability needn’t stop anything!

Find out more about Marie and her family – read her previous blogs. If you have a story you’d like to share, get in touch with the stories team.

It took me 32 years to get a diagnosis. Why is autism in girls still overlooked?

Carly is an Autism advocate, filmmaker and speaker. She wasn’t diagnosed with autism until she was 32, after two of her daughters were diagnosed. She found it a battle to get a diagnosis and started to notice a lack of understanding and resources when it came to autism and girls.

In this blog Carly shares her journey and talks about why we need to start recognising and supporting autistic women and girls. 

Growing up feeling different

My earliest memory is being the kid that couldn’t go to preschool without my mum staying. My mum actually got a job at the preschool so I would go! I remember it seeming very noisy and busy. All the kids were playing but I wasn’t. Then when I started school that didn’t change. I remember feeling very different then and things got even harder in secondary school. I was really anxious. I started realising that I never got invited to birthday parties. I couldn’t cope with bright lights and they actually made my quite hyper. My teachers just thought I was naughty.

My parents took me to see a psychologist at 14. He said I was just lazy and his advice to my parents – which is the worst advice you give an autistic person – was she needs everything new, she needs a fresh start. So we moved house and I started a new school but life just took a downward spiral for the worst. I got into all sorts of trouble, bad boyfriends. Obviously I had no understanding of how vulnerable and naive I was, no idea of the consequences of my actions at all. I ended up pregnant at 15 and living in a homeless hostel. I had my daughter who’s wonderful and I worked hard to turn things around, but there are serious consequences to not being diagnosed and not being supported.

carly-jones-blog-3-resized
Carly at the UN, where she spoke about autism and girls

“You can’t be on the autistic spectrum because autistic people can’t act”

I have three daughters and two of them are autistic as well, which is how I found out that I was. My 14-year-old was diagnosed when she was six and my youngest was diagnosed when she was just two. In the process of trying to find out anything I could about autism and girls for them, I realised “oh this explains everything!”

I went to see an NHS psychologist who gave me a tick sheet with things like “Do you prefer parties or museums?” – you know, one of those. I scored quite highly on it but then he asked “What are your hobbies?” and I said “I love acting” and he said “Oh then you can’t be on the autistic spectrum because autistic people can’t act”.

I left it for a while, then I wrote to the lady who discovered Asperger’s. I wanted to film it so that no-one else would have to go through this alone. Because I felt so alone. She invited me to meet her and I finally got my diagnosis – on film! There was a mixture of emotions but overall it was complete elation. I had my answers and I could start rebuilding my life, understanding who I am. I always felt like a second class ‘normal’ person and now I know that I’m a top class autistic, so I’m fine!

Why is autism in girls overlooked?

I was told in 2008 by educational staff that it was impossible that I could have two autistic daughters because autism only happens to boys. Every book I picked up to try to understand and support my daughters all referred to “he” or “my son”. There was nothing for girls. I just thought why?

I think gender stereotypes are a big problem. Not only are there lots of women who are undiagnosed and unsupported, there are lots of men who present themselves in a more feminine way and they’re not diagnosed and supported either because they’re not the stereotypical view of what autism is – they’re not “train spotters” or like “Rain Man”. Also, female pain and female differences aren’t always taken as seriously. It’s always “Oh they’re probably hormonal”. Even my reaction to the sensory overload was seen as “Oh she’s in a bad mood” – and being autistic, I couldn’t explain my discomfort to them.

Then there’s what I call the ‘chameleon effect’ – masking your differences and trying to blend in. We do this just to survive in a scary, unpredictable world. Things are changing but there are still pockets in the UK where this is happening and girls aren’t being believed and supported.

Head and shoulders shot of carly in front of a brick wall

I want to make sure the girls in our country are protected and supported

Globally there needs to be more recognition of autism and girls. In the UK it’s a really exciting time because I’m looking around and seeing so much more awareness. People finally believe we exist – yippee! That’s my first eight years done. Now my next eight years will be about making sure we have equality; making sure we have the same protection and opportunities as everyone else.

Some things that happened in my life were awful but in hindsight I’m grateful now because I know how important it is to make sure that the girls in our country are protected and given proper support. I spent 32 years of my life thinking I must be “stupid”, “crazy” or “unliked”. Being diagnosed gives you an understanding that this is how you see things and this is how other people see things differently to you. It gives you self-awareness. I’ve got a lot more confidence now. The hardest thing is knowing who you are after years of it being eroded away. I’m still discovering myself now but it’s quite exciting. I’m getting there!

Find out more about Carly’s story on her website. You can also buy Carly’s book about autism and girls.

If you have a story you would like to share, get in touch with the stories team.

Why is it so hard to find books with a disabled character?

Dan White is the author of the brilliant The Department of Ability comic book, featuring a cast of superheroes whose impairments are their greatest superpower.

For World Book Day, Dan tells us how he was inspired to create the comic book and why there needs to be more disabled characters in literature.

My book-devouring, art loving daughter, Emily, had stopped anticipating reading about disabled characters in her comics or literature.  For her, that day would never appear. Or would it?

It was the disparaging look I saw on her face when she first learnt to read that set me on a course of action.  Art, writing and comics are my second love, and that drove me to create the group of disabled superheroes that is The Department of Ability – a graphic novel with a difference, launching later this year!

Disability isn’t the main focus – they’re battling to save the world

I wanted to draw disability in a way that was not really about the disability. Yes, the five characters in he Department of Ability show physical differences, but there’s no backstory, no preface on disability and how it affects this motley crew, you just get 5 different SUPERHEROES battling to save the world in a final war between good and evil.

The Department of Ability are colourful, strong and fun! A ghost? Alien? A Dog? A Cheetah? Emily? How’s that for diverse!?

Several of the characters designed for Department of Ability comic strip
The characters from The Department of Ability comic strip

The Department of Ability has captured hearts worldwide even before the first volume is published. But it’s not just disabled hearts, it’s hearts from everywhere. From the warmth of Matthew Wright, to the voice of The Today Show USA, to the desk of comic genius Stan Lee, the belief and enthusiasm of established comic writer Leah Moore (daughter of Alan) and the tireless work of Scope, all who have seen and loved my creations see a future of change.

There’s a growing desire worldwide to see more diversity and essential inclusion. It’s a strong a message to those in charge of what we read and watch, telling them, “we love difference, and want to see more of it. We all have a right to be heard”.

Inclusion is vital, especially for children

Currently, this world seems to be run by people terrified of accepting disability into the media they enjoy but inclusion is vital, especially for children. They need and want to see images that reflect themselves, otherwise we’re going to have another generation growing up being seen solely as needy and marginalised.  Who wants that?

I read and review many books on disability but they are incredibly rare and it makes you wonder how much more could be achieved if the industry threw caution to the wind and realised the good they could attain by giving us everyday, non-static, non-stereotypical characters.

Inclusion means include, and that means all. It will dispel myths, preconceptions, and will inspire the reader to discuss disability in a whole new light, barriers will fall and disability will not be seen as the last to the party.

A young girl holding up her drawing of her superhero, a mermaid with a wheelchair

I hope The Department of Ability will kick open a door for more diverse stories

All the talents that blossom and bubble in this amazing community will finally be able to show itself to the wider world, it just needs a thinker outside the box to see there is no barrier, and to see the power and might of the untapped purple pound, all £249 disposable billions of it.

2017 is the year of Department of Ability BOOK One, and it will hopefully kick open a door for an army of stories, pictures and talent to emerge.  The authors are there, the future is there, let it in. The Department of Ability are loud, brash, dysfunctional, passionate and determined, a bit like everyone else on earth really.

For National Storytelling Week, we asked for better representation of disability in literature. Read about the activities we’ve done so far and please help us spread the message.

Visit the Department of Ability website to read the comic strips and keep up-to-date with the launch.

For National Storytelling Week – help us champion books that feature disability

Here at Scope, stories are central to everything we do. For National Storytelling Week we’re taking the opportunity to celebrate authentic stories and calling on publishers and authors to improve the representation of disability in literature. Read on to find out about all our activities so far and what we plan to do next.

Why tell stories?

Great stories have the power to connect us, to raise awareness, to make people feel and act. They’re at the heart of everything we do at Scope and they have a huge role to play in achieving social change. Few people are moved by statistics or facts, but when you hear someone’s personal story it can have a powerful impact.

Stories tell us things we didn’t know before; they show us other ways of living, other experiences, other views on the world. They can also make us feel less alone by showing us people like us and stories like ours – happy ending or not.

Telling authentic stories

At Scope, every story is told by the storyteller themselves – we’re just the ‘caretakers’, if you like. Although we interview people about their experiences, the stories we share are always in first person and completely in the storyteller’s own words. And they always have the final say – we never interview and run! We hope this builds trust and shows just how much we value them.

We work with storytellers to share their stories in lots of different ways. This could be anything from a policy report – using real experiences to bring our influencing to life, at events, in fundraising materials, in films and, very often, on Scope’s blog.

We’re really proud of the way we tell stories at Scope. Putting storytellers in charge means we only ever tell authentic stories. We give people a platform to share their diverse experiences and show a more accurate picture of disability. Often, opportunities for people to share their stories are lacking – disability isn’t a huge focus in the media and when it is, it’s often the negative side that you see. We want to make sure that people can tell the story that they want to tell.

Which brings us on to National Storytelling Week.

Dan, an author holding up his comic book, poses with his daughter Emily who uses a wheelchair
Dan and Emily White – creators of Department of Ability

People want to see better representation of disability in literature

In the stories team we’re privileged to hear about a range of experiences in our day to day work. Unfortunately, for most people, their chance to read stories about disability are limited. If you think back to the books you enjoyed as a child, or even as an adult, you’d be hard pushed to find many featuring a disabled person. As a result, lots of people either don’t know much about disability or they only know the limited (sometimes misleading) view that they’re presented with.

This contributes to poor attitudes and stereotypes which can affect disabled people’s lives in number of ways. Another downside is that disabled people don’t get to read about stories and characters they can relate to.

We ran a Twitter poll which showed that 3 in 4 people want to see more inclusion of disability in literature

So, for National Storytelling Week, we ran lots of activities to campaign for better representation of disability in literature, and celebrated some great work that we want to see more of. 

We ran a comic book workshop with Dan White, creator of Department of Ability. Dan was inspired to create the comic book when his 11-year-old daughter Emily wondered why there were no wheelchair users like her on TV. Dan then set out to create a comic book where Emily would lead a group of superheroes whose impairments, far from holding them back, are actually their superpowers. To watch a film about the comic book workshop, head to our YouTube channel.

Following the workshop, we posted each superhero creation on Facebook and ran  a competition – with the winner getting to see their superhero turned into a guest in the next Department of Ability comic book. Here’s a short film of the winner, Daisy, explaining her superhero design.

We also partnered with the Huffington Post to share a blog each day from different storytellers. Incase you missed some of the content you can catch up here:

“Books Hold A Special Place In My Heart – I Just Wish They’d Have A Place For Me” – Heather’s blog

“The World Needs More Disabled Superheroes” – Dan and Emily’s vlog

“I Don’t Want To Read Books That Treat Disability As A Tragedy” – Anne’s blog

“It’s Immensely Important For Disabled People To See Positive Portrayals Of Themselves In Literature” – Asim’s blog

“Hey JK, Why Wasn’t Harry Potter Disabled?” – Phil’s blog

Following that, we partnered with Books on the Underground to do a ‘book drop’ where we hid 30 copies of Quentin Blake’s ‘The Five of Us’ around accessible tube stations. We had lots of engagement on our social media channels and our campaign was featured on Books on the Underground and on Quentin Blake’s website which was an amazing way to share our message with new audiences.

Our next step is to reach out to publishers and authors to ask them to improve their representation of disability in future books. We will keep you updated once we hear more. – so stay tuned!

To find out more about stories at Scope, head to our Stories Hub and please get involved.

I wish my dad had been able to see changing attitudes towards disability

Recent words from RJ Mitte and Alex Brooker have had a huge impact on Andy Bundock, whose late father was disabled.

In this guest blog he praises them for how they’ve been speaking about disability, creating acceptance and understanding that he wishes had been there in his dad’s lifetime.

During the Channel 4 coverage of the Paralympics in Rio, Claire Balding had a number of guest presenters with her. One of her co-hosts managed to explain exactly what Cerebral Palsy was in about three sentences. He managed to sum it up in such an eloquent and easy to understand manner. It was only afterwards that I found out that his name was RJ Mitte (apologies, I never got in to Breaking Bad).

I noticed his slight speech slur, this man clearly had Cerebral Palsy. It was very similar to my late father’s. It completely took me by surprise and I burst in to tears. Quite an extreme reaction you might be thinking. Here’s why.

It saddens me that my dad never got to see this

My initial reaction was “Yes, finally. Someone explaining it! And, on the telly.” Perhaps people will start to understand. I wanted turn to my dad and say “Look dad” but he wasn’t there, it didn’t happen in his lifetime. This saddened me so much, to the point of tears.

Not only was someone taking the time to explain a disability, there were disabled people presenting prime time TV and being accepted for who they are. My dad never got to see this. There was also the added emotion of missing my father. Hearing RJ speak in a similar manner just tipped me over the edge.

I contacted Channel Four and asked them if that clip was available so that I could share it on social media. I really wanted to share it and have more people understand. Unfortunately it wasn’t. But then Alex Brooker’s emotional outburst on The Last Leg happened.

On an episode of The Last Leg, Alex Brooker’s emotional outburst to the audience and to us at home had so much impact. He totally smashed it out of the park. When he drew that emotional breath at the end of it and got a hug from Josh Widdicome my heart went out to him.

Thankfully, this clip was available and when I went to share it on social media, I was so glad to see that so many of my friends had already shared it.

Alex did so much to make people understand what it is to be a disabled person that night. Only with more understanding can we move on together and gain more acceptance of people’s abilities as well as their disabilities.

My parents faced discrimination and ridicule

I grew up in a time where there was little or no mainstream understanding of cerebral palsy – what it was, how it affected people. Both of my parents have / had mild forms of the condition and were on the receiving end of discrimination and ridicule.

They were ‘advised’ not to have children, and it was nothing to do with their ability to conceive. Those bits and pieces were all working just fine. Their ability to raise a child was brought in to question. They also were asked to leave restaurants as they ‘were upsetting other diners’.

But my father was a real fighter. He stuck two fingers up at the world and said ‘I’ll show you’ every single day of this life. He said, I can make one of those and mine will be better.

The lack of understanding affected me too

A lack of understanding breeds fear, particularly in kids of school age so I was a target. I got in to fights and subsequently detention simply for protecting myself and my parents from nasty name calling and ridicule.

This upset me even more, the injustice of it all. I didn’t know how to handle it; I was a teenager struggling to deal with hormones, puberty and spots. But where was the protection from the school? I would very much like to think that this kind of behaviour is not tolerated in schools any more.

Andy's dad holding him as a toddler

My father was a brilliant dad

My father told me he was proud of me every day. He was a brilliant dad and I am so proud of his achievements as a father and as a person. He was an amazing photographer and inspired me to go into graphic design as a career. I got pretty good at it too, all down to his influence.

Alex Brooker mentioned his concern about how he would hold his baby should he and he wife be blessed with a child. This photo of my dad holding me was taken in about 1970. It is the only photo I have of the two of us – he was always the other side of the camera. You can’t keep a good man down, even when they are told that parenting probably wasn’t for them.

If you have a story you would like to share, get in touch with the Stories team.

“Diversity is wonderful” – including BME people in the disability community

Julie Jaye Charles is founder of Equalities National Council (Equalities), Britain’s only BME disabled people-led organisation. Equalities is based in the London Borough of Newham and turns 20 this year.

Julie grew up in East London, with family originating from the Caribbean. In 2015 she won a lifetime achievement award for her diversity work. As we celebrate Disability History Month, Julie and her colleague Robert Modeste talk about Equalities’ approach over the last 20 years and their hopes for the future.

Back in 1995, I didn’t see anybody involved in the campaign for the Disability Discrimination Act (DDA) who was from a black community. There wasn’t anybody around me who I could relate to. This is this why I founded Equalities National Council (Equalities).

By the year 2000 Equalities was four years-old and we had 18 advocates. We didn’t have funding as such, but we had a table and a telephone and people, all disabled people. At the time they were all disabled people from the BME community.

Cultural differences

A lot of BME communities don’t understand the social model of disability. As far as they’re concerned their GP is God. Their GP gives them their tablets and they go away and they feel better. They could be in a wheelchair, have one arm, but they still wouldn’t relate to being disabled because the GP is treating them on the clinical side, so the social model doesn’t come into it. The feeling is that it’s your fault, you get on with it. It’s your life, you get on with it.

Equalities offers advocacy and mentoring. Most people that come to us, some of them can speak English, but they bring somebody with them too. It’s a comfort to speak to an advocate. We’ve got loads of people from Somalia and Lithuania who visit us and they also come for advocacy – so they’re two different cultures and ethnicities that want the same things. We have a Romany advocate who came up here when the mental health team were downstairs because she was homeless, and then about six months later she came back and said she’d like to volunteer. She’s doing well. She advocates for any community. All my team does, because it’s not who we are, it’s what the individual is coming to us for. That’s what we’re offering.

Cuts are really affecting BME communities

Julie standing in a hallway wearing sunglassesJulie: It hurts me when I look at the communities out there, especially in Canning Town, in Newham that has such a deprived community. From the last Census there are 26,000 disabled people in Newham from a BME community.  People are so poor and they’re not getting the support. People are still coming here for the mental health team, but since they’ve been cut and have moved away from the building, our referrals have doubled. They want to talk about housing benefit being cut, they want to talk about social care, wanting things like direct payments, individual budgets – they’ve heard about them, but they don’t know how to get them, all bits like that. Also employment and further education, as unemployment rates are high.

Robert: It just seems that all the wonderful work that we do as an organisation – planning by Julie, countless meetings with ministers, larger organisations – when it suits, it’s great for people to support BME communities, but when it comes to actually funding the work, there’s no one there for us. So it’s very tough. But Julie has a dedicated team around her, myself included, who give up their time freely because they’re passionate about what they do.

Diversity is wonderful

Julie: When they have the Newham festival, if you see how many people go – its thousands. Diversity is wonderful. Food from all over the world, you’ve got Bangra dancing, you’ve got reggae playing somewhere else. You’ve got a place people can pray, no matter what religion you are.

Robert: Anybody that walks through the door, we will help them. That’s probably our unique selling point is as an organisation. I was in young offender’s rehabilitation and no-one wanted to invest in me. Equalities have given me that platform. We need real people out there. Our people, our mentors, have real life experience. I believe that you should give everybody a chance.

I want to set up a commission so we have a voice in politics

I read policies that no one else wants to read because it’s so important. Then, when I talk to some of the ministers, I know what I’m talking about. What I want is to develop a commission so that the whole world knows what the social model means and that disabled people don’t need to feel embarrassed about having an impairment. People can ring up and get advice, but also have round table discussions with ministers, strategists and ministerial advisors.

I want to get representation from all over the country. Since the Disability Rights Commission went, disabled people don’t have a place in society, or a place where we can talk about everything openly, and the ministers can take it back and change will happen. I don’t want to do it my own. I would like to think that people see me as someone they can aspire to and will come along with me.

Equalities National Council is a national disability advice and information service. Find out more about Equalities by visiting their website.

Photo credits: Equalities National Council.

Disabled people and domestic abuse – we need to do better

Disabled women are twice as likely to experience domestic abuse than non-disabled women, yet support services aren’t always accessible. Disabled people can also face unique challenges in recognising and reporting abuse. It’s an issue that isn’t often spoken about. This needs to change.

With this in mind, domestic abuse charity Safe Lives is doing a ‘spotlight’ throughout October and November, focusing on how professionals can better support disabled people experiencing abuse. They have been posting resources, webinars, blogs and podcasts and they are doing a live Twitter Q&A on Friday 2 December.

We spoke to Carly, an advocate for autism and girls, about why this is so important.

I was diagnosed with Asperger’s at 32 which is a late diagnosis, but autism in girls wasn’t really understood. I have three daughters; two of them are autistic as well, which is how I found out that I was. I was looking up everything I could about autism and girls and thought “I’m autistic too” – I ended up being diagnosed on film!  The consequences of not being diagnosed can be severe, including being in unhealthy relationships.

Recognising and reporting abuse can be harder for disabled people

For us all in society, disabled or not, the very nature of what abuse is can be murky. All too often we see adverts of women with bruises as an image of domestic abuse. Abuse, however, takes many forms. It’s difficult enough to recognise and report abuse for anyone experiencing it, but for disabled people it can be even harder.

The choice for a disabled person to leave their abuser is not an equal choice to those who do not rely on their abuser for their daily care as well. And how can a person with a social and communication condition have the equality of access to leave, when they may not even realise that what they are experiencing is abuse?

A lot of autistic people are vulnerable because of our lack of social imagination which is about understanding “If I do this, what happens next?” – consequences. We’re very often so consumed in our own thoughts that we think other people have the same wants, needs and agendas as we do, which can lead to us being very vulnerable. Another thing is our theory of mind – we imagine that other people have similar thoughts to us. So if you knew you were experiencing abuse, you may not report it because you think that other people already know. Because you know, they must do too. It can lead to an autistic person being very angry and resentful because they think “Why aren’t you helping me?” – it’s because that person doesn’t know. You need to ask us direct questions, basically.

Carly sitting at the UN with a few people in the background
Carly, speaking at the UN about autism and girls

A “one size fits all” approach to domestic abuse doesn’t work

It’s only in recent times that coercive control has become a legal offence. For someone on the autistic spectrum who requires support with their routine, the control of their lifestyle, the control of their access to social events and family and control of their money, this could easily disguise an abusive relationship to an onlooker. Mix this with an autistic person’s fear of dramatic change, delay in emotional processing and the theory of mind differences described above, and you can see how someone may not seek help.

We need our safeguarding explained in a different way and support services need to be more accessible. The stuff that’s out there is really good but some little add ons would help. I’ve had a meeting with the NSPCC about their schools workshops and I’ve created a short online course on safeguarding for people with autism, which is free to do. Hopefully it will help people think differently.

Including disabled people in these important conversations

Safe Lives’ spotlight on this issue is vital. The protection of disabled people from abuse is a multi-layered complex matter that simply is not covered by standard safeguarding projects. The media also all too often leave our unique needs and experiences to one side in the vital adverts  and workshops on abuse – how to recognise it and how to seek help.

I think for many people, disabled adults are either viewed as not having relationships or sex and therefore void from these conversations, or seen as just being able to access the same sexual health and abuse information as everyone else. Of course, in reality, this is not the case. The most vulnerable in society are often the last to be supported. Disabled people aren’t asking for special treatment but we are asking for a fitting reflection of our experiences in society and to be part of the conversation, a seamless inclusion and not an afterthought.

If you have been affected by the content of this blog, you can contact the Samaritans or your local Refuge service for support.

You can find all Safe Lives’ content on their website and take part in the Twitter Q&A on Friday 2 December.

Disabled Survivors Unite is an organisation working to improve access to services for disabled survivors of abuse and sexual violence. Visit their website to find out more.

Bullied for being disabled, but we turned it into a positive – Anti Bullying Week

Rosie and Glen were both bullied at school because of their impairments. In this blog they talk about how they moved forward with their lives and want to spread awareness about the bullying many disabled people face. 

Rosie’s story

“Being bullied made me determined to raise awareness about invisible disabilities”.

Being dyspraxic meant at school I always stood out like a sore thumb compared to others.

From the way I walk and move in a clumsy uncoordinated way which was different to others, always falling or bumping into others or other things.

To it’s made me socially anxious and struggle to maintain friendships. I always had and probably will have different interests to people my own age. I’ve always been seen as disorganised, chaotic, messy and a bit all over the place.

Being so different made me an easy target for being at the receiving end of some awful bullying. Words can have such an impact on your life and how you see and perceive yourself. It made me lose what little confidence I had to begin with and really struggle with my mental health and I would hear the words of what people were saying constantly. I thought I must really be stupid as it was constantly being said to me.

I put a lot of the bullying due to lack of awareness to what dyspraxia is, the fact that dyspraxia is invisible to the eye and negative assumptions of what I could or couldn’t achieve. As an adult I still struggle with anxiety and will never be a naturally confident person.

But my experiences made me decide that nobody should have to go through what myself or my family had been through and I was determined that more awareness needed to be raised about issues invisible to the eye.

Rosie 1 edited square

The bullying I experienced has taught me the power of words and why I choose mine so carefully and not make judgements and assumptions about others.

I work as a learning support as a college and know the value of time, patience and empathy can have on students who may be struggling. I have also been able to prove the people wrong who said I wouldn’t achieve anything.

Words have the power to encourage, destroy, make someone loose confidence in themselves or make someone feel hopeful. We can all try and help people feel hopeful.

Glen’s story

“I’m still a little bit shy and probably always will be, but I’m far more positive now”.

I first went to a mainstream school, but it didn’t go well. The teachers didn’t know how to help, and I was bullied by other kids because of my sight loss. So I was removed very quickly, and transferred to a school for the visually impaired that my parents discovered.

Of course, my confidence had been shattered, so I was very shy. Which led to some of the kids at my new school bullying me as well. Not because of my sight, as they were in the same boat, but because they realised they could wind me up easily.

Glen wearing a suit in a park

However, I made good friends, and the teachers were extremely supportive, so my confidence gradually improved over the years. And I even became friends with the kids who had teased me at first. Partly because I was being more successful than them, but I also got to learn more about them, which helped me understand their behaviour and put it into context. We learnt a lot from each other.

So things turned out well in the end. I came away with great friends, fond memories and good results, and got myself a degree and a job. I’m still a little bit shy today, and probably always will be, but I’m far more positive and confident than I would have been if I hadn’t moved schools when I did.

This is an extract from Glen’s blog Well Eye Never. You can read Glen’s full post about bullying here. 

If you have a story you would like to share, contact Scope’s stories team.

Do you need someone to talk to?

ChildLine – 0800 11 11

ChildLine is a free, confidential support service for children and young people. Their staff speak to thousands of young people every day – you are not alone. Phone 0800 11 11 or visit the ChildLine website.

“I want to have a job, get paid, go out, enjoy myself”

Nusrat is 27 years old and recently started a job as a Lab Aide at the Sainsbury’s Wellcome Centre, with help from Scope’s Future Ambitions employment service.

For Learning Disability Work Experience Week, Nusrat shares her journey in to work and her goals for the future.

When I was at school I was thinking –  I want to get paid, I want to earn my own money and that’s what I want to do for my future. I went to college, then when I finished college I went to Project Search which finished in July. Project Search gave me training to help me get a job. I also did First Impressions, First Experiences with Scope. I liked it. I made loads of friends there. We did mock interviews, learning more skills, that kind of thing. That has helped me.

Work experience helped me get a job

I was going to Newham’s employment service and a Workplace advisor told me and my mum about work experience through Project Search. I thought it sounded good, that’s why I wanted to do it.

The work experience was good. I liked working with my tutor and job coach from Project Search. I liked working in the kitchen, giving patients tea and coffee in the morning. I liked working in the canteen, emptying the bins and cleaning the tables. I learned new skills. I learned to give food to customers and how to make tea. I learned to use the till. I did that with a colleague. I worked as a host. I was learning to be a housekeeper. I didn’t like that, it made me feel sick. I was also in an office, typing, answering phones. I enjoyed it. I liked it. We finished at the end of July and had an awards ceremony. My mum came. She said she was very proud of me.

I learned about listening to colleagues and managers. I learned how to make tea. I learned about working with people. I also learned about interview skills. Doing the work experience helped me get my job.

Nusrat sat at a long table smiling, with a cup of tea

Support to do my job

Jodi from Scope told me about the job at the Wellcome Trust. I wanted to come here and work in the lab. I came here for an interview. I was brave, confident, and polite. I liked it. Jodi was there too. I love this job. I want to do it, I enjoy it and I like my colleagues.

I like Jodi because she’s really friendly and very helpful. She supports me so my mum knows it’s okay, she’ll look after me. Jodi comes in to visit me at work. It’s nice to see her and I like working with her. If she doesn’t visit, I can just give her a text. It’s nice to have someone to talk to.

It’s difficult for me to travel. A taxi comes to pick me up and takes me home, takes me to work. Jodi has sorted things out for me. If I didn’t have the taxi it would be difficult for me to do this job.

My hopes for the future

I’ve never experienced bad attitudes. I’ve worked with some good people. It was hard to find a job at first though. I don’t know why, I’m not sure. I was looking for jobs but they wouldn’t hire me. Employers need to change their attitudes and respect other people.

I work hard. Working with other people has improved my skills. In the future I’d like to be able to go out with my family, go shopping, help out at home. I have lots of friends and that makes me happy. I go to a friendship club to meet other friends and I enjoy it. I want to have a job, get paid, go out, enjoy myself. This is what I want to do for my future.

If you would like to share a story about work experience or employment, get in touch with the Stories team.

I used to hide my autism from employers, now I see it as a positive – End the Awkward

Felix took part in First Impressions, First Experiences, a pre-employment course for young disabled jobseekers. Since then he’s been working hard to reach his goals and he’s passionate about changing employers’ attitudes towards disability. 

For End the Awkward, Felix talks about how he learned to see disability in a positive light and why employers need to do the same.

Before I joined Scope’s pre-employment programme, I was working for a firm in East London. Unfortunately it didn’t go according to plan and I realised that, while my autism can’t be ignored, it isn’t something that I should be ashamed of.

Now I talk about disability in a positive light

In the past, I wouldn’t have disclosed my autism to potential employers, but Scope’s pre-employment programme taught me how to talk about it in a positive way. Now I do talk about autism and those who I’ve worked with have seen it in a positive light. Instead of just seeing autism as a negative, I’ve shown that there are many positives as well.

I think there are two ways to improve inclusiveness in the workplace. The first thing is for employers to be educated about disability, but another way is for potential candidates, who are disabled, to strike up the confidence to say “This is my condition, this is why I need support”. I’ve also learned to highlight the positives that I can bring to the workplace so that potential employers don’t feel the need to question my abilities.

Employers shouldn’t hide from disability

I read an article about how 49 per cent of companies don’t want to hire someone who has learning difficulties and that affected me because I’m part of that demographic. And unfortunately, it said further on in the article that only 7% of people with learning difficulties are in employment which means that 93% have been forgotten about.

Workplaces can be more autism friendly by being patient when it comes to communication, reinforcing boundaries regarding employee relations, and if there is an incident where the individual is anxious then it would be best to find to out why. They should acknowledge that autistic people have skills and see how those skills could be best utilised by the organisation.

Felix laughing with a friend

Education is key

I discovered that two thirds of the public are still uncomfortable with people with disabilities, and that’s very clear in terms of employment and in terms of social life. There’s a long way to go to improve attitudes and awareness.

I feel like there’s a lack of diversity regarding the public image of disabled people. When people think of a disabled person they usually think of somebody who’s using a wheelchair. But it’s so much more.

People need to be educated about what cerebral palsy is, about what autism is, how they can make adaptations, and so on. Education is key so that employers know how to support that person’s needs. You could have a positive mindset but if the work environment isn’t supportive, it can go downhill from there.

Everybody brings something new to the table

I think that awareness campaigns like End the Awkward can have an impact on employers and on the wider public. Disability is a broad spectrum. Just because someone is disabled, doesn’t automatically mean they can’t do something.

You can’t compare yourself to everybody else. Can you imagine how bland and boring the world would be if everybody was the same? Everybody brings something new to the table. My achievements are a testament to how disability doesn’t have to be a barrier to having a good life. It’s time other people realised that.

You can stay up to date with everything End the Awkward on Twitter and Facebook using #EndTheAwkward or visiting Scope’s End the Awkward webpage.