All posts by Hayley Tomkinson

I'm in the Stories team at Scope.

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.

My tips for ending awkward dating moments

Guest post from Phil Lusted, a web and graphic designer from north Wales.

For End the Awkward, he talks about awkwardness when it comes to dating and sex and gives some tips for getting over it.

When I was born, I was diagnosed with a rare form of dwarfism called diastrophic dysplaysia which means my bones don’t grow like an average height person would. Being only 3ft in height, I have come across many awkward moments in my life, one of the most common is being mistaken for a child or spoken to like a child.

Everyone wants to be loved unconditionally. This includes those who have visible or invisible disabilities. We are still human, with feelings just like any other able-bodied person. Unfortunately, for disabled people, dating can involve uncertainty and more than a few awkward moments. Like the time a waitress asked my date if I needed a high chair before we got to our table. Needless to say, I did not.

My tips for dating

A first date can be nervous for any person, some thoughts that would typically run through my head would be: “What will she think of me and my height?” “Will she think I’m a weird shape?” “What if she feels embarrassed around me?”. It is perfectly normal for us to think like this, we all do it no matter what size or shape we are, it’s all part of being human and how our brain works when in a nervous or first time situation.

To help avoid awkward situations with your date, don’t be ashamed to educate them on your disability before actually going on the date. Tell them any needs you may have or any assistance you may need while on the date, this will put yourself and your date more at ease, you will both be pretty much on the same page with her or him knowing more about your disability and needs.

I knew my girlfriend three months prior to our first date which gave her plenty of time to learn about myself and my dwarfism, which resulted in our first date being comfortable for the both of us, that way we could enjoy our time together without any awkward situations taking place.

Phil and his girlfriend hugging and smiling, on a wooden bench with trees in the background

Sex and confidence

A lot of nervousness may also be from your own body confidence; I know this from my own experience. Because I was born with severe scoliosis, my back and chest are a funny shape which has in the past affected my confidence. Something as simple as taking my shirt off in a public swimming pool would never happen.

It’s important to be confident in yourself by not being ashamed of your appearance, at the end of the day, we all come in different shapes and sizes, it’s something we should embrace and be positive about. Life would be a little boring if we all looked the same. Also keep in mind that if your partner loves you unconditionally, then you have nothing to fear or feel awkward about when it comes to showing your body.

Communication is important

One of the biggest issues caused by feeling awkward or embarrassed is a lack of communication. Despite sex being considered a “private” or “taboo” subject, all relationships require communication and dialog. I think being open with your partner is very important, especially as disabled people.

Talk with your partner about sex and discover what’s best for the both of you to avoid having close-minded expectations. Remember that not everything works with every partner, so it is important to be patient with one another.

The more you talk to one another the less chances you will feel uncomfortable and awkward when it comes to being intimate together.

You can read more about Phil’s awkward moments in his blog for last year’s End the Awkward campaign.

For more tips on sex and dating, check out the films and stories on our website.

I’m not avoiding you, I have face blindness! – End the Awkward

Carly is an Autism advocate, filmmaker and speaker. She wasn’t diagnosed with autism until she was 32, and now works to raise awareness of autism and girls.

For End the Awkward, Carly shares some of her own awkward experiences, especially those related to a lesser known aspect of autism – face blindness.

I was diagnosed with autism at 32. It’s typically seen as a male condition, but I have three daughters and two of them are autistic. Everyone I knew with autistic children had sons. There was nothing for girls. So I went on the internet and looked up everything I could about autism and girls. That’s when I first thought “I’m autistic too!”

Misconceptions about autism

When I was 14 my parents took me to see a psychiatrist because I was having difficulties. I couldn’t go to school, I was constantly anxious, I spent a lot of time in my room. He just said I was lazy. Then, after my girls were diagnosed and the penny dropped for me, I went to see a clinical psychologist. He made me do a test and, although I scored highly,  he asked about my hobbies. When I said I’ve always liked acting, he said “Well you can’t be autistic then because autistic people can’t act”.

He also asked if there was any chance I could be making this up because autism in girls is so rare it’s impossible to have two in one family. So I went to the National Autistic Society and I decided to make a film about getting a diagnosis. I ended up being diagnosed on film!

I think it’s important to teach parents and to show people that there shouldn’t be any stigma, it’s okay to be autistic and it’s okay to be a parent and be autistic.

Awkward moments with face blindness

Before my diagnosis, I had no idea that face blindness even existed. Now I realise I’ve been dealing with it all my life. If someone wasn’t where they should be, like if I saw my teacher in the supermarket, I didn’t recognise them. People must have thought I was rude.

Now that I know I have face blindness, it can be even more awkward, because if I think it might be someone I know I start hugging them! Sometimes it turns out to be a complete stranger. I have a friend who has distinctive dark hair, often wears a checked shirt, and spends a lot of time in a café that I also go to. So one day, I walked into the café, saw a man in a checked shirt, with similar hair and I kissed him on both cheeks. Then I realised his wife was looking at me like she was about to hit me. It was the wrong person!

Another time, at New Year’s Eve, the person I was with was wearing a shirt that was very popular at the time. Midnight comes and we had a kiss, as you do, and he tapped me on the back. I was kissing a completely different person! It didn’t go down well. If I’d had my diagnosis at the time I could have said “Sorry  – I’m face-blind”. What a good excuse!

Carly smiling at the camera on a wooden bench with a brick wall behind her

I get words mixed up a lot

Autism is a communication and language disability, which affects me in different ways. One is that I tend to just say what I’m thinking. It’s like being Jim Carrey in Liar Liar and I can’t stop it. Everyone says “Oh you’re such a funny person” but I don’t mean to be a funny person at all. I often take things too literally as well. Which can be really awkward.

I often get words mixed up. For example, the words necklace and knickers just sound the same to me. It’s very important that no-one ever asks me to take my necklace off! Another one is I often mix up how and who, which can be awkward as I often ask “Who are you?” rather than “How are you?” or if I’m being asked “How are you?” I may reply “Carly?” or if I’m asked “Who are you?” I may reply “A bit chilly actually”. As you can imagine, this, on top of not recognising people, makes the outside world rather daunting!

Ending the awkward

When you get diagnosed you get self-awareness. An understanding that this is how you see things and this is how other people see things differently to you. I spent 32 years of my life thinking I must be “stupid”, “crazy” or “unliked”. Now I know why life was, and still can be, awkward. I hope by sharing my experiences I can help people.

It’s okay to say to people “This is how my disability affects me”. For example, if we arrange to meet, I ask if they can send me a photo of what they’re wearing that day. A lot of my autistic friends, we naturally do this with each other. So we’ll say I’m stood here, I’m wearing a blue coat and I have a red bag. It might seem weird to non-autistic people so we need make people aware, tell them how they can help. Decent human beings aren’t going to trip you up on it. I think anybody with a disability would prefer that people ask questions about what we need. We don’t mind. Not asking can break down any communication and that’s really sad.

When I saw End the Awkward I thought this is really good. Not everyone wants to listen to the serious side of things but boy there are some funny awkward stories! I think humour is the best way to get people to remember something. Information is really important but sometimes it can feel a bit like “Am I studying for this?” I think a joke helps bring people in.

To find out more about Carly’s work, visit her website.

Read the rest of our End the Awkward blogs, or get involved in the campaign by submitting your awkward story. 

“I hate it when people fake” – and other things you hear as a part time wheelchair user

Chloe is a student and blogger, creator of Life as a Cerebral Palsy student and an Ambassador for CP Teens. 

She has mild cerebral palsy, seizures and sometimes uses a wheelchair. For End the Awkward, she talks about some of the awkward moments this brings and how a balance of education and humour is the way to improve attitudes.

People often think I’m drunk

I’ve had various nights out where people thought I was completely wasted. I have cerebral palsy but I can walk unaided, with my stick. On a night out I don’t tend to wear my splints. I probably look ‘normal’ when I’m sat down and when I stand up people are shocked. People assume that, because I’m on a night out with friends, I’m drunk, when actually I can’t drink a lot with the medication I’m on anyway. At most, I might be a bit tipsy but bar staff will say “Oh you’ve had one too many”.

I tend to go one of two ways – I either make a joke, like “Oh yeah I guess I am… wonder why I’ve got this stick though” or I just say “Well actually I have cerebral palsy, I’m not drunk”. To which they’re usually like “oops”.

Misconceptions about wheelchair-users

Once, I was out clothes shopping with friends and I was in my wheelchair. My friends went one way to look at something and I was looking at a dress. It was on a higher hanger so I was leaning forward, not even standing up, just reaching and this woman looked at me and said “Ugh I hate it when people fake.” I was thinking “What?!” and obviously my friends weren’t there to back me up. I said “Excuse me?” and she said “Well you know, all these people pretending” and I said “Do you know what a part time wheelchair user is?” and she still didn’t believe me. I was just a bit speechless so I just went in the opposite direction.

Should we carry you down the stairs?

I’ve been at a restaurant where there were stairs to go down and the waiter came over like “We could carry you down the stairs?” so I said “I’ve got my stick, I can get down myself if that’s okay” and he just stared at me. I was like “I can walk. I may be exhausted by the time I get to the table but then I can sit down for the meal and I’ll be fine. And he was like “Oh… okay… so do you want me to carry your chair” and I said, “Well yes, that would be very helpful”. I’m amazed by how many people still think you either use a wheelchair all the time or you don’t, or you can either walk or you can’t.

Photo of Chloe in her wheelchair, wearing her leg splints

Fear of the unknown

Because I also have seizures I get avoided quite a bit – people don’t want you to go unconscious on them! It can happen anywhere, like in the middle of busy city centres! There can be warning signs but it varies. I have three different kinds of epilepsy. It can range from “Sit me down now, I’m about to pass out” to no warning whatsoever and I’ll just fall.

I definitely think it’s more a fear of the unknown that anything else. People aren’t sure what to do if it happens so they don’t want to be in that situation. There are so many different kinds of seizures. People think about the ‘typical seizure’ but a lot of mine aren’t like that. So they don’t really know what’s going on. Their instant reaction is to call an ambulance or stare at me, neither of which is helpful. I rarely need medical intervention.

There’s no need to avoid me though. Once I collapsed on one of my friends and she wasn’t sure what to do but I came round and it was fine. She knew that I had seizures but she’d never actually seen one until then. She just joked “A warning would have been nice!” and now she’s used to it.

Ending the Awkward

I think you have to use it as an opportunity to educate people but maybe with a slightly humorous twist. You don’t want to be too serious because I think they’ll just go “Right I’m avoiding doing that again ever in my life”  but if you laugh it off too much they might not realise that what they’ve done is bad. It’s about getting that balance right.

To hear more from Chloe, visit her blog. 

Read the rest of our End the Awkward blogs, or get involved in the campaign by submitting your awkward story.