Tag Archives: attitudes

Joan Ross: A life remembered, 1939 – 2017

Joan Ross, a contributor to Scope’s Speaking for Ourselves project, died in January. Born with cerebral palsy in 1939 (when disabled children didn’t have to have an education), she went on to become  a language teacher, girl guide leader, advice officer for 17 years at Haringey Disabilities Consortium and a published author.

Using extracts from her interview in the British Library Sound Archive, we celebrate her life.

Going to schoolJoan as a child in a black and white photo

“My mother took it for granted that I was entitled to education like everyone else… She wanted me to be able to read so that I could read to myself and so on. She saved for me to go to a little private school very near where we lived, but they refused to have me so she tried the local infants school that was all on one level, and they were very reluctant. The headmistress did want to take me, she was willing to have me, but the education authority weren’t happy about me going and I didn’t have to go to school; it wasn’t compulsory.

So my mum decided to go to the education offices every day to ask them when they were going to find a place for me at this school she had in mind, and one day when she went she heard one of them say, ‘That Ross woman is here again’, and so she said, ‘Yes. And I’ll be here again tomorrow until you offer me a place for my daughter at school’.

So they did agree to place me in the school that she’d chosen, on condition that she came there and took me to the toilet twice a day, maybe more, fed me at lunch time; the teachers would teach me but nothing else, no personal care. But she was willing to do that and I was very happy there.”

Brownies and Guides

“We had a uniform which made me feel one of them. Our school icwbicc-24didn’t have a uniform so I enjoyed having an identity. I enjoyed the badge-work in Guides because that was way of proving myself.

“We didn’t really take a lot of exams and that at school, so this was a way of stretching myself and proving myself. The Guides, once they realised that I was just the same as them, except I was in a wheelchair, accepted me and I really felt one of them.

“After I left school. I was still in the Rangers, the senior part of the Guides, and one of the things the Rangers did was help with Cubs and Brownies, so I was delighted when I was asked if I would like to help with a Brownie pack, and I did that for about a year, or maybe longer. And then my own church Brownie pack was without a leader and I longed to offer to take over the pack but I didn’t want to do that because I didn’t want to be turned down. So I was delighted when I was approached to actually do that, and I did it for 15 years.

And it really compensated for not working because it gave me an important job to do which took a lot of time but was very worthwhile.”

Looking for work

“I kept on looking out for jobs. I went to a few interviews and some of them were better then others, but nothing very promising.

“There was nobody to advise me. I went to the job centre to see a disablement resettlement officer, but she really didn’t seem to have a clue how to help me. And so I just looked up jobs and I wrote to the Director of Social Services in Haringey and I did have an interview, which looked quite promising…

“They wanted to set up an advice and right centre for handicapped people in Islington in the day centre, which would deal with telephone enquiries on benefits and also lots of problems relating to disability.

“And I applied for that job and got it and it was an amazing experience.

“I wasn’t teaching but I was helping other disabled people and
carers and expanding my knowledge all the time. I went on training courses and the project was managed by the Citizens’ Advice
Bureau so we were able to go to their training courses as well.

“And the scheme lasted the year and… they hoped that they would get more funding for it to continue but when the year was up no funding materialised, at a time when the centre – it was called ARCH [Advice and Rights Centre for the Handicapped] by the way – and it was really making very good progress and helping a lot of people, and we just couldn’t abandon it because the project wasn’t being
funded. I had another worker – there were two workers on the scheme – the other person was disabled as well, he was called Melvin, and we decided to carry on working for ARCH voluntarily for another year.”

Joan’s commitment to her community then led to her being an advice officer for 17 years at Haringey Disabilities Consortium.

To hear Joan’s interview in full, go to the the Disability Voices website at the British Library Sound Archive.

Joan Ross and Lynda Bellingham
Joan Ross and Lynda Bellingham at the launch of Joan’s book

Read Joan’s autobiography, I Can’t Walk, But I Can Crawl.

 

I was told I may never walk again – now I’m going to run a Half Marathon!

Erika was told eight years ago she may never walk again. She talks about the barriers, attitudes and challenges she has had to overcome from day to day. Now she faces her biggest challenge yet – running a half marathon.

I have Ehlers-Danlos Syndrome (EDS) and a form of Dysautonomia called Postural Orthostatic Tachychardia Syndrome (PoTS). My autonomic nervous system does not work leaving my body unable to control basic functions such as heart rate, digestion and blood pressure. My connective tissue is also faulty; it is weak and stretchy causing daily dislocations and pain and exhaustion just to name a few. When I was 12 I was diagnosed with Complex Regional Pain Syndrome (CRPS), due to this I lost the use of both my arms and legs, I was told I would never walk again.

Social pressures and attitudes

Love it or hate it social perceptions surround us everywhere we go, overflowing our brains like a virus on an unsuspecting computer. Without realising, judgements are made on a person’s abilities and circumstances without real knowledge. Embarrassment, awkwardness, isolation; formed from age old perceptions and misunderstanding, feeding down through generations, effecting perceptions today. You ask why and you’re told “It’s just the way it is”.

The frustration runs through our veins like the harshest river, everyday willing the banks to burst, for reality to prevail and everyone to see we are human too. Constantly having to prove ourselves twice over, opening up our souls to strangers in a futile attempt to prove we are more than a malfunctioning body, more than a pity case, more than our disability.

What do you think of when you hear the word disability?

When you hear that word, what first comes to mind?

“I feel sorry for you.”
“You’re so brave.”
“I’m so lucky I’m not like you.”
“What kind of life is it to be like that every day.”
“You’re not living, you’re surviving.”
“I hope my children are not like you.”

For many it is these six heartbreaking quotes. For too many people, a person with a disability is seen as someone who is surviving, not living. A person saddened and ruined by their circumstances.

However to me, my disability made me the person I am today.

The person who gives everyone a chance, no matter what their past.
The person who works tirelessly every day to achieve my goals.
The person who knows the sky is the limit.
The person who is a dancer.
The person who is understanding.
The person who is training for a half marathon.

It is now 8 years after being told I may never walk again and I am currently training for a half marathon which I will be completing in aid of Scope.

Feet of disabled woman training

A half marathon for me will be an extremely physically and mentally tough journey. I don’t mean it’ll just be a little tiring, I mean one of the toughest things I will ever do!

So, why do it then?

Good question!

I have grown up in a society where disability and illness are a taboo. A vast majority of people assume that illness and/or disability mean you can no longer live a fulfilling life and that you definitely can’t do sport. This made life growing up with a disability hard for me, and even more so when I fell very ill two years ago. I felt consumed by hopelessness, overcome by the unknown, realising the things I would never do. Social perception cemented this belief in my mind, pushing me every day to give up. Telling me it was “just the way it is”.

The thing about disability is it makes us powerful. It provides knowledge of issues much wider than our own. Opens our mind to what life really is and that it is up to us to form our own future. If we are able to overcome what society dictates we should and should not be able to do then we can do absolutely anything.

So I am determined to do this half marathon! Training will be hard for me, I know that. I also know that there will be times that my health will go downhill, I will be scared, upset, angry and want to give up. There will be days when I will think it is impossible.

But I will remember the power I have. And I will remember the little girl with Downs Syndrome I used to teach dance to and the many other disabled children out there with so much passion, enthusiasm and raw talent. And I will do it for them. I will aim to change social perception so that they can grow up with less of a fight, knowing that just because you may be disabled or chronically ill it doesn’t mean you can’t do something, just that you may have to do it in a different way.

Feelling motivatedby Erika’s story? Take a look at some of our challenge events today

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.

“You do not need to be in a wheelchair to be disabled!”

Guest blog from Fi Munro. Fi has been living positively with stage four ovarian cancer since her diagnosis at the age of 30. 

Since her diagnosis she has personally raised and inspired others to raise thousands of pounds for various charities by sharing her story. As a blogger and campaigner, she strives to improve awareness of ovarian cancer.

She uses a colostomy bag and has recently experienced a number of negative attitudes when using a disabled toilet at London King’s Cross Station.

Okay, I’m getting on my soap box.

I hate, hate, hate the ignorance and stigma around invisible disabilities. Let’s get one thing clear, you do not need to be in a wheelchair to be disabled!

In January 2016 I was diagnosed with stage IV ovarian cancer and then in May 2016 I had a massive operation to remove five organs and a few partial organs. This resulted in me having a colostomy bag, which I’ve talked about at length in a post on my own blog.

One of the main impacts of this is that I need to use a disabled toilet now to ‘sort myself out’ and I even have an awesome universal radar key that opens all disabled toilets with a ‘radar lock’ – handy!

Fiona, a young disabled woman, smiles and poses for a photograph

Are you a doctor?

At the weekend, I was in London Kings Cross Station and before boarding the train I went to use the disabled toilet. Changing a colostomy bag on a moving train is not a pretty sight, especially if you are receiving ongoing cancer treatment. I’ll let you use your imagination!

There were two disabled toilets and both were occupied so I waited. On either side there were lengthy queues to the ‘normal’ male and female toilets. When one of the disabled toilets became free I went to enter and a staff member put their arm in front of me and told me that I couldn’t use it because I’m “not disabled”.

Erm, wait a minute!

Are you a doctor?

More importantly, are you my doctor?

Are you psychic?

Do you have any idea how offensive that presumption is?

I was so upset! In front of a crowd of people I had to explain my situation in detail before I was allowed into the toilet. And, as those of you with a colostomy know, time is precision in these moments!

When I was finally allowed in I locked the door and burst into tears!

It didn’t get better from there either. I came out to ‘tutting’ observers and staff shaking their heads. I was so upset and felt so stigmatised. This needs to change!

Not all disabilities are visible

Fiona, a young disabled woman, smiles with her colostomy bagWe need better public awareness and better staff training. I would like to highlight that I am not so much upset with the member of staff I mentioned – more so the lack of training given to them and also the lack of awareness from the general public around invisible disabilities.

Together we can make a difference and help remove stigma by recognising that not all disabilities are visible.

Please share and help ensure that no one else is made to feel stigmatised.

Thank you!

Love and light, Fi

You can follow Fi on Facebook or read more about her experiences on her blog.

Language plays a central role in how we view disability – Disability History Month

Throughout Disability History Month we have been celebrating the lives of disabled people from the past such as Franklin Delano Roosevelt, Alfred Nobel and Frida Kahlo and explored the changing lives and experiences of older disabled people living in the UK.

In the final week of Disability History Month, Jack Welch, who campaigns to raise awareness of the challenges people with autism face, looks at the importance of language, the theme of UK Disability History Month 2016.

In the UK, we’ve made good progress in recent decades to provide legislation on the rights of disabled people. Despite these changes there are deeper challenges and barriers people with visible or invisible conditions still encounter.

For someone like myself on the autistic spectrum, the obstacles to get the right level of support in a mainstream school and identifying what reasonable adjustments are needed in employment are just a couple of examples that many, like myself, have to confront.

Disability hate crime

From recent research by the Equality and Human Rights Commission, figures on disability related hate crime are worrying and attitudes towards disabled people are still of great concern. Disabled people aged 10-15 were almost twice as likely to have experienced a crime compared to non-disabled people (22% contrasted with 12.4%).

If levels of hate crime are still happening at this rate, despite recent developments and more positive portrayals of disabled people as we’ve seen with Rio 2012, we need to redouble our efforts to make people more aware of using language that is respectful of disabled people.

Jack smiles at the cameraI experienced a disability related incident on London underground recently. I was left shaken and frustrated at other people’s ambivalence and that they choose to look away. Those who verbally attacked me were younger than me. Scope’s End the Awkward research, shows younger people often have difficulty in approaching a disabled person. What role can schools and education play to improve this attitude towards disabled people?

So what can we do? Newspapers and other media outlets still use phrases like ‘suffering with autism’. I have autism, I don’t feel I ‘suffer’ from it.

Language plays a central role in how we perceive individuals with certain conditions and that in turn reflects our behaviour when we meet a disabled person.

We all must consider the language we use and how it can affect disabled people, and we need to begin from a young age. It’s more difficult to confront and combat prejudice at a later stage.

We need to prevent negative attitudes from developing and leading to the incident I experienced.

Find out more about Disability History Month on our website.

Jack has started a discussion about the importance of Disability History Month on Scope’s community where people can share their own experiences and discuss the impact language has on their lives.

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 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.

Not a superhuman? Never feel guilty for not doing ‘enough’

Anna Scutt is an actor, singer and hypnotist. In this blog she writes about the impact that adverts like ‘Meet the Superhumans‘ had on her, and how she’s come to accept that it’s okay to admit you’re not okay.

That ‘Meet the Superhumans’ advert. It, and programmes like ‘Disabled Daredevil’, used to make me feel inadequate for not doing something amazing like a bungee jump or a triathlon.  Until two things happened last weekend to change my mind.

One, I read Kim Daniel Daybell’s blog ‘You don’t have to be an athlete to be superhuman’, and two, I got talking to a man sitting next to me at the theatre.

“How does your CP actually disable you?”

He was very impressed that I had come to London on my own.  In the course of conversation, I told him I had also been to Milan to the opera, and that I’d sung in opera myself at university.  At which point he asked ‘Forgive me, but how does your cerebral palsy actually disable you?’

That made me think. Things that I consider ordinary – I drive, I sing, I’ve got a language degree and can watch all those Scandi-noir dramas without subtitles – non-disabled people consider superhuman because they realise that those things are way more difficult for me than they would be for them. They’re not being patronising, they’re just being non-disabled. He was genuinely interested though, so I answered his question: I am in constant pain. I didn’t tell him I hate it. And it took me a long time to admit it, but it’s OK to hate it.

Anna acting on stage. She sits on a mans knee, turned towards each other, in period costume
Anna playing Gwendolen Fairfax in The Importance of Being Earnest, with Paul Henshall as Jack Worthing

Never feel guilty for not doing ‘enough’

There are so many inspirational stories on the internet that not being OK with my CP made me feel like a failure.  But who doesn’t hate being in pain? That doesn’t make me a failure, it makes me human.

All these inspirational people tell you that you can do anything you put your mind to, but actually, ‘Yes, I can’ might not apply to you.  And that’s OK too.  I mean, it sucks, but it’s nothing to be ashamed of.  I want to dance – tap, jive, quickstep – but my body doesn’t.  I am an actress and I would love to be in a lavish costume drama, but there aren’t many wheelchair users in Jane Austen.  Feel sad about it, feel angry, but never feel guilty.

Anna smiling at the camera in her wheelchair

If you want to play sport, opportunities have improved thanks to the Paralympics.  But if you don’t, nothing much has changed.  Coronation Street did more to raise awareness for me.  I used to get glared at in public if I got out of my wheelchair and walked, as if I was faking my disability. (I blame Little Britain’s Lou and Andy!)  But since Izzy Armstrong stood up out of her wheelchair at the bar of the Rover’s, the glaring has stopped.

Equality is still some way off, but it’s OK not to be a trailblazer or an activist. Someone else will raise awareness; someone will take that inaccessible shop to court, but don’t feel guilty if it’s not you.

You’re only human, after all.

If you want to find out more about Anna’s career, check out her webpage or watch her showreel. 

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

 

“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.