All posts by Hayley Tomkinson

I'm in the Stories team at Scope.

Dyspraxia and social anxiety: why I’m not hiding anymore – End the Awkward

Guest post by Rosie, who has dyspraxia, which affects her movement, balance and sensory processing. For End the Awkward, she talks about feeling different, her journey to acceptance and how she stopped hiding.

I’ve always been aware of how differently I learnt and how tasks which everyone else found really easy took me so much longer. At the age of 4 I was diagnosed with dyspraxia, an invisible difference which is still very misunderstood. Dyspraxia is thought to be caused by a disruption in the way messages from the brain are transmitted to the body. This affects my ability to perform movements in a coordinated way, balance, motor skills and sensory and emotional sensitivity.

Every person with dyspraxia is affected differently. Even though I’ve always been very determined, I was also very shy and self conscious. I hated being centre of attention and any fuss made feel uncomfortable. I really struggled making friends as everyone was very different to me.

People didn’t understand

The lack of understanding which surrounds dyspraxia didn’t help at all, a lot of people didn’t and still don’t know what it is. I was misunderstood, judged and negative assumptions were made about me. I was called clumsy, careless, stupid, lazy and told that I simply wasn’t trying hard enough.

If you had asked me to describe what dyspraxia was and how it affected me I would have avoided the subject completely. I just didn’t know how to talk about it and was scared that people would run a mile if I disclosed to them. Awful bullying and ignorance at work had left me too anxious to speak, struggling with social anxiety and in a dark place.

Feeling different

A common theme for many dyspraxics is feeling different and struggling to make and maintain friendships. Over the years I’ve beat myself up a lot and wondered why I couldn’t be as socially confident as others, which is an ongoing challenge. I struggle with managing my emotions and can be prone to panic attacks and sensory sensitivity, which means the environment around me can be very overwhelming.

I’ve also spent a lot of my life hiding. Hiding from situations or environments which either triggered my anxiety or where I’ve felt uncomfortable. I concealed my  dyspraxia and social anxiety which lead to me experiencing depression. For ages I thought it was just me being me.

Rosie dressed up for an event

Anxiety was taking over my life

Social anxiety made me feel in constant worry that I was going to embarrass or make an idiot out of myself. I worried that I would have a panic attack, experience sensory overload in public or say something that nobody “gets”and have everyone laugh at me.

Then there’s the constant worry that you’ve done something to upset someone and that people hate you and are simply putting up with you. When you’re anxious your whole body can tense up, you can start feeling sick and you can struggle to give eye contact, which is hard enough when you’re dyspraxic. It was easier to avoid doing anything or going anywhere.

After hitting a very low patch I realised I couldn’t  go on like this. Anxiety was slowly taking over my life, stopping me enjoying the things I loved and leaving me fearful, low and constantly on edge, unable to sleep and with zero confidence and self-esteem. The more anxious I became the more clumsier I was and the more mistakes I was making and the more I beat myself up. It was a vicious circle.

Meeting others helped me stop hiding

I got involved in Dyspraxia Foundation where for the first time I felt like I could be myself. Nobody judged me if I made any mistakes. I met others who were dyspraxic and I didn’t feel so alone. I began to learn about how dyspraxia affected me but also the strengths which dyspraxia can bring, which to me are being caring, creative, able to think outside of the box and I’m a very determined soul.

By spending so much time hiding I wasn’t showing the world all of Rosie and I was missing out on so much. With the support that’s out there, I’ve been able to achieve a degree and a masters degree. I’m also learning strategies to help me cope with day to day life and support my mental health.

Ending the Awkward

I’ve been able to help others by writing blogs and raising awareness, helping them feel less isolated and alone. It’s given me more empathy when supporting students in my job as a learning support assistant. I’m determined that nobody should go through or feel what I have. Learning to be kind to myself is something I’m still working on but I’m fighting my fears one little step at a time.

That’s why I’m getting involved in Scope’s End The Awkward campaign. Disability and difference is nothing to be scared of – we’re human beings with feelings. A little bit of patience, time, and kindness can go a long way. Nobody deserves to be made to feel embarrassed or ashamed of being different. After all, wouldn’t the world be such a boring place if we all were the same? You never know what you might find out when you take the time to get to know someone.

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.

To read more from Rosie, visit Rosie’s blog.

Sign language isn’t just for swear words – End the Awkward

Liam is a student, writer, blogger and has his own radio show. He also happens to be deaf. For End the Awkward, Liam writes about awkward moments, misconceptions and how to communicate with a deaf person without avoiding them or making them feel uncomfortable.

I’m not a comedian, yet there seems to be something I do which makes people laugh on a night out. Except I’m not laughing and everything’s suddenly turned a little bit awkward. It’s a tumbleweed moment, and I don’t know what’s so funny.

I’ve misheard something. All it takes is for me to confuse two similar sounding words and everyone around me either laughs or feels uncomfortable. It’s particularly easy for this to happen in a pub or restaurant, where background noise is a constant problem. As soon as I realise that I’ve misheard and ask for clarification, the conversation has moved on and I’m told it ‘doesn’t matter’. It’s frustrating, but I try to shrug it off.

For the rest of the night, people avoid conversations with me in case there’s another mishap, so I’m left trying to understand people talking around me. It’s particularly hard in a bar when there’s a lot of noise and a group of men in the corner getting way too invested in a game of football.

Communication is key to ending the awkward

Most hearing people don’t know how to communicate with deaf people, and that’s where the awkwardness lies. Poor deaf awareness has led to misunderstandings and a sense of mystery surrounding the deaf community.

Something I still find uncomfortable is asking someone to repeat themselves. Sure, as someone who struggles to hear now and then, you’d be right to think that I’m allowed to say ‘pardon’ every once in a while. Yet, as I ask them to say what they’ve said again, I fear that they’ll do something which isn’t helpful – be it shouting, exaggerating lip movements or getting frustrated.

In the end, I’ve resorted to asking someone to repeat themselves around two or three times. After that, I just nod, smile and agree. It saves the hassle, but it becomes a problem when you then find out that they were complaining about something you shouldn’t have agreed with. Oops.

Liam wearing radio headset, smiling at the camera

Sign language has so much to offer people

In 2014, I was on the National Deaf Children’s Society’s Youth Advisory Board. At the first meeting, I met a few young people who use British Sign Language. However, as I didn’t know any BSL at the time, I was forced to write on scraps on paper, or use mobile phones to talk to them.

It worked, but not knowing basic BSL made me feel a little embarrassed. So, in-between the next three meetings, I tried to learn sign language wherever and whenever I can. The end result was that I could finally communicate with my friends on the youth board in BSL. Now, I’m more involved in the deaf community and a few misconceptions I had have since been debunked.

As someone who is keen to teach others, I’ve had a lot of friends ask me to show them some BSL. The only problem is that they want to know swear words and not useful phrases which will help break down the communication barrier.

How to End the Awkward

I’m not saying that every hearing person has to take BSL lessons. Next time you meet a deaf person, just say hello and ask how they like to communicate. If they happen to know BSL, ask if they can teach you a few words or phrases. If not, there is one workaround which I am encouraging my friends and other people to do.

Written English is the best way for deaf and hearing people to communicate together. If a hearing person cannot understand BSL, and a deaf person is struggling to understand what they’re saying, then taking out a phone and going to the notepad app can really help. It may feel awkward for the hearing person having to type out their response instead of saying it, but the alternative is far more awkward and confusing.

Eventually, hearing people will get to understand the lives of deaf people, ending the misconceptions, ending the mockery and ending the awkward.

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

“I want to make the extraordinary seem ordinary” – disability and employment

At a fringe event at the recent Labour Party Conference in Liverpool, organised by Scope and the Fabian Society, senior Labour Party parliamentarians, policy experts and disabled people shared their experiences of employment. The group considered how to ensure disabled people played a key role in the changing world of work.

The panel consisted of Shadow Secretary of State for Work and Pensions Debbie Abrahams MP, Neil Coyle MP, General Secretary of the Fabian Society Andy Harrop, Scope’s Head of Policy, Research and Public Affairs Anna Bird and Lauren Pitt.

In this blog Lauren talks about her experiences of employment and her thoughts following the panel event.

I lost my sight at the age of 13. When I graduated from university in 2015, I began what turned out to be a long and difficult job hunt. I applied for over 250 jobs but despite being qualified, I only got interviews about 5% of the time. The interviews were generally very negative about my disability. They’d ask “How are you going to be able to do this job?” and I would think “Well I can, otherwise I wouldn’t have applied” but it’s difficult if you’re not being given the chance.

“In phone interviews, when I mentioned that I was disabled their attitudes changed. Potential employers were suddenly less interested in what I had to say.” – Lauren, in her opening speech

I eventually got offered a job and I’m really enjoying it.  When Scope invited me to speak at this event, I immediately said yes. For me, none of the process of getting into work was easy. I came because I wanted to make that process easier for other people. I’m keen to change attitudes towards disability in the workplace and by sharing my story, I want to help disabled people have the confidence to get jobs.

I want to make the extraordinary seem ordinary

People think it’s extraordinary that disabled people work but I want to make the extraordinary seem ordinary. We want to contribute to our communities as much as an able-bodied person. We have no reason not to be and we shouldn’t be stopped from doing that.

Employers may see disabled people as having certain disadvantages, but those disadvantages can actually be very advantageous. We have to be problem solvers, we’re determined, resilient and we want to work.

A massive barrier is people’s attitudes. People see us in the Paralympics and think “oh look at that blind person running” but we can do so many other things. People need to see the variety of jobs that disabled people are in.

The panel sit behind a white table in front of a screen that reads "An inclusive future"

Policies and support need to be better

At the Job Centre, there was the assumption that I only wanted part-time work. Well, no. I might be disabled but I can still work full time. I want to contribute as much as anyone else and I can.

Information about the support available also needs to be better. Technology is essential in supporting me to do my job as well as anyone else can and that’s provided by Access to Work. But it took four weeks after my assessment for my equipment to arrive – four weeks where I wasn’t able to do my job. Also, research done by Scope showed that around half of people said they don’t know about Access to Work or don’t know how to get it. Well, that needs to change. Without Access to Work, there’s no way I could do my job.

Stories show people what’s possible

We need to share success stories and use them to show disabled people and employers that disability doesn’t have to be a barrier. Stories change people’s minds. Scope’s End the Awkward campaign has changed people’s minds already – people often talk to me about it. By seeing disabled people doing things, you believe that it’s possible.

It’s also important that disabled people believe in themselves. When you see others succeeding, you think “Maybe I can do that”. Commonly more negative stories are shared and people see those and think it’s not going to happen. I know towards the end of my job hunt I wanted to give up. I just didn’t think I was ever going to get a job. I knew I could do it but by the end it was like “Can I?”

A massive thing for disabled people is confidence. The world is not an easy place to live if you’re disabled – you’re faced with barriers left, right and centre. But there are also ways to overcome those barriers. And it’s about learning those ways and being given the right support. You get ground down by applying for jobs and not getting anywhere.

Lauren crouching down with her guide dog, both wearing robes at her graduation ceremony
Lauren and her guide dog at her graduation ceremony

Sharing knowledge is really important

Another thing I would love to see would be the option to have a mentor – either another people who is disabled and currently in work or an employer. Sharing experience is a massive thing because it builds up that self confidence and that knowledge. You’re not going to learn something unless you’ve got someone showing you. I want everyone to see that disabled people can work just like everyone else. My line manager went for an interview and said that she worked with someone who’s blind and they were like “How?” and she was liked “Well, like this…” and that’s the thing, it’s a transfer of knowledge.

I also think it’s important to educate people when they’re young, which is something Scope are doing at the moment, with their Role Models programme. The more people see at a younger age, the better their attitudes will be. Sometimes older people say it’s amazing that I’m working – well, it’s not really that amazing and they wouldn’t say that to my brother, who’s sighted.

Working together to change the future of employment

Today was great. Everyone on the panel spoke about the many things that can be done to help disabled people find and stay in work. We also spoke about things that aren’t being done that should be – some things that can easily be implemented and other things that may be more difficult and how funds can be better used.

I really enjoyed having this opportunity to talk to disabled people, politicians and people who worked for different charities, all of us coming together to share the knowledge and ideas that we have, to help change the future for disabled people in employment.

Scope has partnered with the Fabian Society to produce a series of essays that look at how the modern and future world of work can be inclusive for disabled people.

To read more about Lauren’s journey into work, read her previous blog.

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

“There’s not one single experience of being disabled” – creating our End the Awkward campaign

End the Awkward is back for a third year and once again we’ve based our campaign on the real life experiences of disabled people. Over the past few months we’ve gathered ideas and tested content, through focus groups and conversations with a variety of people.

In this blog, two of our End the Awkward ‘testers’, Jack and Jamie, talk about why it was so important to be involved, their thoughts on the campaign and some of their own awkward stories.

Jamie

I was excited when I was asked to participate in a focus group discussing the future of End the Awkward. The group organisers were keen to hear our opinions and clearly valued our input. We discussed not only the message and overall impression that we thought End the Awkward 2016 should convey, but individual details such as the setting, dialogue and disabilities portrayed. As the group contained people with differing impairments, the discussion highlighted many points that we may not have thought of individually. There is not one single experience of being disabled and I was pleased that our different impressions could help avoid a tired or clichéd message.

Jamie, a young man with glasses and a beard, smiles at the camera

Like many disabled people, I’ve experienced awkward moments around other people who don’t know me very well. This often means a well-meaning person saying completely the wrong thing, or polite people, scared of doing something rude, avoiding me altogether. Sometimes, this makes me feel guilty, as if I was responsible for their awkwardness. I know this is ridiculous, and that I don’t control others reactions, but this limited communication makes me look internally for an explanation. End the Awkward, for me, suggests that this tension does not have to happen. Though embarrassing situations may still occur, instead of worrying about them, we can point to them and laugh.

Several years ago, I was out for a birthday meal with friends, when the staff come over to sing Happy Birthday. Even the sight of this happening to other people makes me embarrassed, so I was already cringing when the waiter asked me to stand on the table. As my impairment includes invisible mobility problems, I couldn’t do this, but the staff mistook this as shyness and insisted that I at least stood on my chair. After some panicked looks from friends and a brief explanation about being disabled, the staff looked absolutely mortified. I told them that they had given no offence and they sang anyway, though slightly nervously. In the end though, I got a free slice of cake, which tasted like a silver-lining.

Jack

With the next phase of End the Awkward on the horizon, what better way to capture some of those life experiences from disabled people themselves, to ensure the campaign is reflective of everyday challenges we might encounter.

Jack smiles at the camera

In July, a selection of people came together to shape some of the latest developments in a focus group. Facilitated by the creative agency George & Dragon, the main purpose of the discussion revolved around new film concepts, which will be targeting young audiences in particular. As shown by past research, one fifth of 18-34 year olds have admitted to actively avoiding a disabled person in conversation. In one way or another, everyone had at least one memorable moment that felt socially complicated.

Whether it revolves around nights out, failings on public transport or people just making life harder than needed, there are still many barriers which make this a necessary campaign. We all agreed that the disabled person in each of these scenarios needed to be seen in an empowered role and not to appear as a victim in any sense.

While I’m not disabled physically, the preconceptions of people about my interests and abilities, as well as reluctance to disclose my condition in many situations means that I sometimes have to meet demands of people like there are no limitations. One day I would like to think there will be no need to always explain basic autism facts, but until then, we need campaigns like End the Awkward to start some of those tricky conversations.

Want to get more involved in End the Awkward? Share your awkward stories with us

I’m not a hipster, I’m epileptic! – End the Awkward

Bekki is 21 and an intern in Scope’s Campaigns team. She studied History at Oxford University, exploring disability and discrimination.

For End the Awkward, Bekki shares her own experiences of awkwardness and explains why there’s no need to hide from disability.

Awkwardness is a natural part of human interaction. However, when it comes to disability, awkward encounters often take on a slightly more negative tone.

Some conditions fall into a grey area between visible and invisible. Like mine, I have photosensitive epilepsy which you might not know just by looking at me. But I do have to use aids, such as specialised sunglasses, in order to go about my everyday life.

On top of this, there’s the stereotypical view that an epileptic seizure is always a convulsive seizure. In fact, there are over 40 different types of seizure which all look very different. This can be alarming and confusing if you aren’t familiar with them.

People often overreact when I have seizures

I have three different types of seizures; convulsive, prolonged partial and partial. Partial seizures happen most often and these are the ones I often encounter problems with.. They occur between ten and twenty times a day and can range from blank staring, to violent head shaking, or my eyes rolling back into my head.

During my more ‘alarming’ seizures, I’ve had people yell “WTF, are you the possessed or something?!” followed by that person rapidly removing themselves from my presence to avoiding assisting me because “I must have done something to deserve it”. I’ve even had religious officials telling me they’ll pray for me or making the sign of the cross at me, so I don’t go to hell.

Rebekka smiles at the camera

I’m not hungover, I’m epileptic!

The more typical responses I get are based on assumptions about why I’m wearing my sunglasses or using a Mac computer. They’re not what traditionally spring to mind when someone thinks of accessibility aids.

Because I wear my sunglasses on overcast days, during the winter months or inside, and can only use Mac computers (due to different pixel technology), I can no longer count the number of times I’ve had to say “I’m not a hipster or hungover, I’m epileptic”.

I’ve even had to avoid wearing hats because of the comments I get and the ease at which people can remove them from my head.

Avoidance really isn’t the answer

There is a reason why priority seating signs on transport and in bathrooms have been changing their disability signs. In the twenty first century we have begun to recognise that there are a range of different access needs and we shouldn’t make assumptions based on traditional representations of disability.

Some people may have never seen a seizure before, but street harassment and avoidance isn’t the answer. This only isolates disabled people further and makes everyone feel awkward about something that can’t be changed. It may look weird to you, but it’s part of my everyday life. And that’s okay. I came to terms with it a long time ago and often laugh about it with family and friends.

Engage with the awkwardness – it’s a fact of life, not a fact of disability. Maybe next time, talk to me instead of comparing me to a demonic entity?

 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 daughter was thrown out of a pub for being disabled

Last weekend, after celebrating Brighton Pride, Jenny’s daughter Charlie was asked to leave a pub because she is disabled. Jenny chose to share their experience in a post on Facebook and the response has been amazing, with messages of support coming from hundreds of people. The post has now been shared over 1000 times, as well as in the media.

In this blog Jenny shares her story, why she felt she needed to write it, and why raising awareness of invisible disabilities is so important to her.

My 19-year-old daughter Charlie has two chromosome abnormalities and is a bit of an enigma. On the one hand, she is very innocent, child-like and can’t read or write but, on the other hand, she has a great vocabulary and wants to be a teenager, just like other young people her age. She will never be able to do things on her own because she is vulnerable and unaware of consequences. Anyone who has met Charlie will know that she is one of the sweetest people you could ever wish to meet.

On Sunday night, Charlie was thrown out of a pub in Brighton – for being disabled. There was only one other customer in the pub as everyone else was sitting outside on the benches. As we were being served, I suddenly noticed that Charlie was crouching quietly on the floor with her hands over her ears. She said it was because a sudden burst of loud music had startled her. The barman said she would have to leave.

I was shocked and explained that she was disabled, that the music had temporarily scared her but that she was okay now. He insisted that she was not welcome no matter how calmly I tried to explain why this was wrong. We had no option but to do as they asked.

Why I chose to share our experience

This was the first time I’d written about something like this. Brighton is quite an inclusive place and Charlie and I are quite well known. We’ve never really had much experience of negativity. When we were told to leave the pub, I tried my best to explain why it wasn’t acceptable in a calm, friendly manner, but they were just completely dismissive. They said “Right you’ve had your say, now you have to leave”. I was frustrated and sad, more than angry, about the injustice of it.

It affected Charlie very badly. She was devastated. She said she wanted to die, she said that she didn’t want to be disabled. She just thought everybody hated her. And I thought people don’t hate her, people really, really like her. So I just wanted to put it out there because it was so unfair and I thought people who knew Charlie would be able to say “Well Charlie’s lovely” because she is.

Headshot of Jenny and her daughter Charlie smiling with the sea in the background
Jenny and Charlie smiling for the camera

The response has been amazing

I just thought it would be shared among my friends so it’s very strange now that it’s been shared 1000 times! Charlie’s had so many amazing comments from lots of people, those who know her and people who are feeling the indignation on her behalf.

Charlie can’t read or write and never will be able to, but I’ve been able to read out the comments that people have left. It was amazing to get those supportive messages. And what has been particularly uplifting but also sad, is to see that so many other people have had similar experiences, all over. Not just in pubs but with the general public.

I want to raise awareness of invisible disabilities

Things like this do seem to happen more with invisible disabilities than physical disabilities. As I said in my Facebook post, at the pub I asked if he’d discriminate against a wheelchair user and he said “Of course not” and I said “Well what’s the difference?”.

Life can be very difficult. For instance, this morning, although Charlie is 19 and a half, I’ve had to shower her, wash her hair, make all her food and drink. I’ve had to rescue the microwave twice. Sometimes it’s exhausting and to have to also cope with unnecessary discrimination as well, it’s so completely unfair. Why shouldn’t a disabled person be able to live their life the way they want, just like any non-disabled person?

If this is a chance to stop this happening again, I’m going to do all I can

Charlie smiling at the cameraQuite a few people have said that this might set a precedent, which would be wonderful. Hopefully invisible disabilities will be recognised and accepted in the same way that visible ones would be. I hope people like Charlie and other disabled people, don’t have to go through this again. It would be wonderful to think they can just live their lives without anyone discriminating against them.

Making people aware is a hugely positive thing. I’m not somebody who would normally go out and ‘sell ourselves’ but if this is a chance to make sure something like this doesn’t happen again, I’m going to do all I can. Because that’s the only way change is going to happen.

You can read Jenny’s full post here. If you have a story you would like to share, get in touch with Scope’s Stories team.

Update

The Mash Tun pub have investigated this incident and the staff member involved has been dismissed from their job. The Mash Tun are now working with the disability organisation Enable Me to improve the way they treat their disabled customers. Jenny has also released a new statement on Facebook about what happened. 

 

Attitudes held me back but with the right support I finally found a job

Lauren is 23 and recently began her first job as an administrator for a social enterprise. At the age of 13 Lauren lost the vast majority of her sight to a rare genetic disorder and is now registered blind. In this guest post she talks about the long and difficult journey to find a job, the difficulties disabled people can face and how she found success at last.

Looking for work

I graduated last year with a 2.1 degree in theology and began a long and difficult job hunt. I was under the illusion that with a good degree, a strong CV due to all of the volunteering that I’d done, and a lot of determination, I would find a job with minimal difficulties. This couldn’t have been further from the truth.

I applied for over 250 jobs in a variety of roles but I had no response from about half of them. I had some interviews but I didn’t get any further despite them giving me positive feedback and saying that they hoped I found a job soon.

Disclosing my visual impairment

I made the decision to disclose the fact that I was visually impaired on almost all of my applications and on my CV. My impairment nothing to be ashamed of so I wanted to be honest and open from the start.

I’m almost certain that some of the reason for not hearing from a lot of the jobs that I applied for was due to the fact that they underestimated what I could do because they knew that I was blind. In interviews I often spent most of my time explaining that, although I was blind, I could do the job just as well as anyone else who had applied.

Finally finding a job

I applied for my current job through the CharityJob website. After uploading my CV and a cover letter, I heard back from them the next day. Their email was extremely positive, asking how they could help make the interview best for me, if my guide dog would need any water and what they were to be like around her.

I went to the interview on a Monday and was told that I would hear back from the company on the Friday, but I heard back from them the same afternoon! They invited me for a taster session the following Thursday so I could see how they worked and for them to see how I worked.

The taster session was extremely positive, the team were lovely and I immediately felt like I fitted in. I heard from the team the same day offering me a job and I was delighted to accept!

Lauren crouching down with her guide dog, both wearing robes at her graduation ceremony
Lauren and her guide dog at her graduation ceremony

 The right support is essential

Access to Work have helped with my transportation and getting me the equipment I need to do my job. On my first day I had an assessment to understand what I needed and then we were given the go ahead to order the equipment.

For example, Jaws for Windows which is a screen reader, a braille labelling system and a splitter box which means I can simultaneously listen to my screen reader and the telephone. Having this equipment will ensure that I can do my job as well as my sighted colleagues and that my visual impairment doesn’t mean I’m at a disadvantage.

It’s a really good scheme but the process is slow and has too many stages to it. It would be far better if it didn’t take so long to sort out because for the first month at work I was unable to do my job and had to sit with other people to listen to what they were doing and this was at times frustrating. I just wanted to be able to get on with my job.

I also have very supportive friends and family who were there for me through the no’s and celebrated with me when I eventually got the yes that I had been so desperately waiting to hear.

My employer has been incredible

It’s a varied job and I’m really enjoying what I am doing. They have never had a disabled employee before but they supported me from the beginning and asked me what I needed. They were very supportive and fully participated throughout all of the Access to Work stages.

Now I have everything that I need, I am settling in with my team and getting to grips with the work that I need to do.

Feeling disabled by society

I feel that society’s view of my disability disables me far more than my actual disability, which I find incredibly difficult.

The unfortunate statistic is that two thirds of people with a visual impairment are unemployed and I was determined not to be. I was unemployed for 8 months and I remember feeling at times that I was never going to get a job and feeling pretty useless. I’m very glad to have a job and I’m keen to use my experiences to help others.

How attitudes can improve

I feel that people in many cases don’t look beyond a person’s disability and look at their limitations rather than the unique advantages that employing someone with a disability brings. People with disabilities in many cases are resourceful, determined, outgoing and want to work.

It’s time that there was more awareness about people with disabilities in the work place. We shouldn’t be overlooked just because we’re disabled.

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

 

Recruiting personal assistants means I can live my life how I want to – Nadia

Nadia is 24 and lives in West Yorkshire. She’s a student and a campaigner with Scope for Change – Scope’s training programme for young disabled campaigners. Nadia employers her own personal assistants and last year, she won an Employer of the Year award.

She told us what this meant to her, what she looks for in her employees and how they support her to live a busy, independent life.

I’m profoundly deaf and I have cerebral palsy. To communicate, I use a communication aid called DynaVox. I can also sign British Sign Language but my body physically limits my signing. I’ve been employing personal assistants with the help of my family since I was eight years old. I started off with two or three and now manage a team of eight, as well as one volunteer and a communication support worker.

With support from my team, I can enjoy a busy life

I volunteer at a college and I like to meet friends, go to concerts, festivals, weekends away, travel and go for cocktails. I also need support to go to conferences, events and college. My team help me to be independent. For example, I’m planning a backpacking trip around Europe. They also help with everyday life including personal care, showers, writing and communicating, feeding and dressing me. All of these responsibilities are done respecting my autonomy.

I like to recruit personal assistants myself

I find staff through advertising on the internet. I also use Facebook groups, Twitter, Gumtree, the deaf community and students learning sign language.

I’m often pre-judged so I feel it’s better to meet people myself. I like to meet face to face and assess their skills. Employing my team myself, as opposed to through an agency, means I can plan my life how I want. If I want to socialise until 2am, I can arrange it. If I plan something that others may think is impossible, I have a fantastic team that will work with me to make it possible.

I look for people with similar interests, open personalities and honesty. I welcome diversity. I like people with skills in deaf awareness, signing and good receptive body language. I also need people who understand my thoughts and how I process language, someone with a good sense of humour, who can think quickly if problems arise. My team have supported me at the best times, but also at some of my worst times.

Working together with my team, we get to know each other well. I support my team emotionally, with advice and through training. I also plan nights out which my team are welcome to join and this builds relationships.

Nadia on a night out with a group of female friends all smiling

I’ve had moments I will always remember

In 2015 I visited London. I was going to the Houses of Parliament to give a speech with Trailblazers. Afterwards, we were at St Pancras station and there was a man playing the piano. He was an old Italian man and he sang a song called ‘That’s Amore’. My personal assistant, Sam, signed and I danced with my electric wheelchair. We were in the middle of the train station. I felt so happy and free.

Then we went to King’s Cross Station and I saw what looked like a big birdcage lit up with different colours. We went to have a look and saw that it was a swing. I told Sam to go on it and she said “No, you get on it!”. I felt safe so I agreed. She got me on the swing and held me while pushing. I felt excited and it was so different. Every day I’m sat in my wheelchair. I felt air on my legs while I was swinging and I laughed so much. I will always remember that experience.

I was so proud to win an award

This year I was nominated for an award – “Best individual employer who employs their own care and support staff”. The event organisers were Skills for Care. On the night of the awards I had a headache, felt so sick and I wanted to go to bed. My clinical support worker persuaded me to stay for the results. When they announced that I had won, I was surprised, happy and proud.

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

 

I’ve had many run ins with trolls and bullies – Harvey Price has scored a victory for now

Vicky Kuhn is a disability rights campaigner, journalist and blogger. In this guest blog she talks about Harvey Price’s recent TV appearance as a victory against cyber-bullies, her own experiences and why she’s supporting the campaign to tackle it.

This week Harvey, son of former glamour model Katie Price, spoke out on live television about the bullying he has endured online. Harvey is blind, autistic and has condition called Prader Willi Syndrome.

In his latest television appearance, it was easy to see just how vulnerable Harvey is. His Mum Katie insisted that he appear live, rather than in a pre-recorded segment, so that viewers could see just how hurt he has been by the attacks. When asked what he would say to someone being horrible to him, he blurted out “Hello you c**t”!

Despite the propriety of live television, support for Harvey has been immense, and he has received hundreds of tweets in support of what he said. This is a victory against Harvey’s bullies for now, but the internet is crawling with cyber-bullies and trolls who prey on anyone they see as an easy target. It is now expected that if you have any kind of online presence, you will have to deal with abuse from these sorts of people. I myself have had many run ins with trolls and bullies.

Wheeling the catwalk for ‘Catwalk of Diversity’

In April of 2015 I had the privilege of wheeling the catwalk with some amazing girls. Headed by Katie Piper, the ‘Catwalk of Diversity’ saw myself and my now very dear friends, strutting our stuff on the catwalk wearing some stunning fashion.

Vicky smiling and striking a pose in her wheelchair at the Catwalk of Diversity fashion show
Vicky striking a pose at Catwalk of Diversity

The twist on this particular event, hosted at the Ideal Home Show in front of huge crowds, was that each of us had something that makes us special and different. Two of the team, Tulsi and Raiche, are burns survivors and have visible scars. Brenda has alopecia and Lynn is missing an arm. Olivia has a large scar on her chest from multiple heart surgeries, and Jess and Kerri have visible differences too. I was the only wheelchair warrior that day.

The experience was magical and liberating, and being the social media butterfly that I am, I posted constant photos and updates during our run on the catwalk. All of the feedback I got in person was super positive, and at each show the audience was packed. People clapped and cheered and we felt amazing.

Then the trolling started

Never having any idea that the event would have so much coverage, I personally was stunned when I went in for make-up on day two and saw newspapers with our pictures and online glossy mags like Cosmo featuring us too. It was pretty overwhelming but nice that what we were doing was being well received.

This, for me anyway, was when the trolling started. There was a segment of the show where we wore t-shirts saying ‘what do you see’? The idea was to challenge people’s perceptions and get them thinking about how the world perceives disabled people and people with visible differences.

Vicky, a young woman, sits in an electric wheelchair wearing a Tshirt that says "what do you see?"
Vicky wearing the T-shirt that sparked her troll experience

I posted a picture of myself across my various social media platforms, and as you can imagine it was perfect troll bait. Answers to the question on my t-shirt ranged from ‘a fat b****’ to ‘an ugly cripple’ and everything in between.

I did get similar comments on other photos from the show, but I just shrugged them off. I am extremely proud of what we achieved in that show, and of the photos that I posted online.

I won’t let it hold me back

I still post lots of photos on my various social media platforms, and of course I get mean comments. A plus size girl in a wheelchair is always going to make an easy target for people who get a kick out of trying to tear others down. It’s no different to the playground.

People try to build themselves up by knocking others down. But I can take it. I’m an adult with healthy self esteem and a good sense of who I am. I put myself out there online on a daily basis, and anyone who doesn’t like it or doesn’t like me will be ignored.

We need to tackle cyber-bullying and trolling

When I remember how I felt at 13 when I was bullied in school for being different, I know how Harvey must feel. My bullies said things to my face and that was bad enough. Cyber-bullies are faceless and don’t have to account for their actions. They hide behind a screen and a username and the bullying is merciless.

For kids like Harvey, and others his age, it doesn’t stop when they leave school. I hope Katie’s campaign to tackle cyber-bullying gets a huge amount of support so we can stop vulnerable people from being targeted.

If you’ve been affected by cyber-bullying and trolling and want to share your story, you can get in touch with the stories team.

If you’d like to read more from Vicky, visit her blog Around and Upside Down.

 

Learning to run again as an amputee – Chris’ story

In 2008, keen runner Chris and his wife Denise both lost their left legs in a motorbike accident. Together they recovered and Chris was determined to keep running. He’s since taken part in long-distance runs and triathlons, and in January 2016 he climbed Kilimanjaro to celebrate his 60th birthday. Chris is running the Royal Parks Half Marathon for Scope in October. In this blog he talks about learning to run again and why you shouldn’t let anything hold you back.

Getting back into running

There aren’t many amputee runners so a lot of it you just have to figure out for yourself. One of the first books I read after the amputation was Chris Moon’s autobiography. I got somebody to bring it to the hospital. I knew I needed it for inspiration, to get me excited about the possibility of running again!

We met with three prosthetic companies. When I asked about running, one of the prosthetists said he’d never had anyone wanting to run before but agreed it would be possible and his company would find a way. He actually got Oscar Pistorius’ prosthetist to come over and get me fitted up with a running leg that had an articulated knee. He got me running very quickly but it took a year until I could run 5km continuously with it.

The right prosthetic makes all the difference

After a while he suggested I try a pylon leg, which is one without an articulated knee. I really wasn’t keen because the movement is different. With an articulated knee the leg comes straight through, but you have to swing a pylon leg out to the side for ground clearance which looks awkward. But he said “Believe me Chris think it would make a big difference”. So we went to the running track, fitted the leg and I broke my 400m record within about 10 minutes!

We were told this statistic: if you’re a below the knee amputee you use about 15-25% more effort. If you’re above the knee, which I am, it’s 60%. It’s a lot of work! But with the pylon leg I can bounce along quite comfortably. Now when I’m running I’m not thinking about the leg. It’s just heart, lungs and the clock – just like it used to be.

Chris running the half marathon in Qatar
Chris running the half marathon in Qatar

How training has changed

Where we live is a fantastic place to run. There’s a National Trust property 500 metres up the road. You can run for miles on beautiful trails.

I’m slower now so the training takes longer; I have to plan it a bit more. I used to be able to run around six minutes a mile, now anything under 10 is good! Training for a half marathon now is a bit like training for a full marathon before the accident. I have done a full marathon with my pylon leg but it was a massive undertaking.

You have to take care of the stump, making sure you have Vaseline in all the right places! If you do get a rub it can stop you from training for about a week. You’ve also got to find a way to control sweating because the liner will start to slip. A friend suggested I try a car cloth because it absorbs a lot of moisture and it doesn’t slip. So I tried that, put the liner over the top and I’ve never looked back! It’s made a huge difference.

Advice for others

Get in contact with other people with a similar disability and find out what’s possible.

When I was training for my first triathlon I had no idea where to begin, particularly with cycling. I found para-athlete Sarah Reinertsen’s website and sent her an email. Within a couple of days she came back with a four page response with all the information I needed! I just used that as a guide book. The reason I can cycle is because of that email.

When we were still in Houston I spent some time chatting to a depressed young man who was just amazed that I was racing with an above the knee amputation. He’s racing now – and that proved to me that it’s not just about being physically able to do it but psychologically able too. So if I can inspire others, that’s what I’d like to do.

Chris running the half marathon in Houston, Texas.
Chris running the half marathon in Houston, Texas.

Don’t let anything hold you back

Despite our injuries we haven’t changed inside. We’re the same people, life goes on and it can be as enjoyable. It’s just a new normal.

Some of the runners I used to train and race with aren’t able to compete any more because of various injuries or health issues. Whereas I’m still thinking “what can I take on next?” – so I’m really not complaining!

I did my first triathlon in 2011 and it was just fantastic to learn a new endurance sport, something I’d never done before and with only one leg – it’s just incredible. And I climbed Kilimanjaro this year with my son – it was a treat for my 60th birthday!

Why I wanted to fundraise for Scope

In 2012 I joined my daughter in her first half marathon, ‘Run to the Beat’. We decided to raise funds for charity and, as a para-athlete, Scope was the obvious choice. Recently, Scope emailed me about Royal Parks and I thought “I would love to do that”. I love those parks and used to train in them when I worked in Central London. It’s also a chance to raise money again for Scope – it’s perfect!

Join Chris and the rest of Team Scope by running the Royal Parks Half Marathon this year. Sign up for £25 today and take on the challenge!

To read more of Chris and Denise’s story visit their website. You can also sponsor Chris here.