Tag Archives: cerebral palsy

How growing up with cerebral palsy helped me achieve my dream of being an author

Throughout her life, people have made Rachel feel like she couldn’t achieve as much, because she has cerebral palsy. Those negative attitudes always spurred her on and today her hard work has paid off. Not only is she realising her dream of publishing a novel, she’s done this alongside her full time job, proving that with hard work, you can achieve anything.

In this blog, she writes about determination, pursuing your goals and seeing disability as a strength. 

Having had cerebral palsy since birth, I realised when I was in primary school that I would always have to work harder than everyone else to achieve my dreams.

I worked so hard to learn to walk, to hold pens, to tie my shoelaces and to fasten buttons. Sometimes, I’d become angry and frustrated at not being able to do things my friends could but then I started to think about alternative ways of doing things, such as getting Velcro put on my shirts and shoes.

I have difficulty holding a pen, so it took me longer to write essays and do homework. Despite that, I loved writing diaries and stories as a way to understand my experiences and I dreamed of being a writer.

Having spent hours of my childhood having physio on my legs and hands to improve my co-ordination, it was ingrained in me that if I put the effort in, I would reach my goals. Which is why, when working full-time as a primary school teaching assistant, I decided to stop writing in my notebooks and actually knuckle down to take writing seriously.

My own experiences shaped my novel

When I started my novel, I wanted to use my writing as a vehicle to say something about my life. I chose to write about a young woman with a facial birthmark and relate some of my experiences and feelings growing up with cerebral palsy through her.

One theme in particular is how suffering cruel comments as a child forms her view of herself as an adult and how she finally accepts herself. The main difference between my central character and me is that Ivy can cover her disfigurement whereas my impairment is on view to everyone I meet.

People sometimes make judgements when they first see me. I’ve also had strangers ask what is wrong with me which I find intrusive. I can almost hear them breathe a sigh of relief when I say ‘cerebral palsy’ as they can compartmentalise me beneath that neat label.

A book on a table next to a mug of coffee

Not giving up

There have been some evenings after challenging days in school when I just felt like sitting in front of the T.V. instead of looking at a computer screen for three hours. But having a long-held dream in my sights of becoming an author, I stuck at it.

Early last year, I submitted my first three chapters and synopsis to half a dozen literary agents. A couple got back to me to say that they liked my writing but my novel didn’t fit their list. Although disappointed, I was heartened by their response to my novel and I wasn’t about to give up on my dream.

The theme of the book is about putting the past behind you to live every day in the best way you can, which resonates deeply with me and I felt it was a message other people should read. So, I was delighted when the Book Guild offered me a publishing deal!

Seeing disability as a strength

From an early age, having cerebral palsy has given me a different perspective on the world to most people, forcing me to question why people act the way they do towards me, aspects which I’ve incorporated into my writing.

Writing is also all about hard work, routine and perseverance. Growing up having to spend hours learning how to walk or how to pick up and use a pen gave me qualities which have enabled me to complete my novel and achieve my dream of becoming a writer.

Somehow, I’ve managed to write a novel while having a full-time job and I think it’s my sheer determination that has got me through it.

Having cerebral palsy has not only made me into the writer I am, as I touch on disability themes in my work, but it’s been a defining factor in achieving my writing dreams. 

Roses of Marrakech by Rachel Clare is out this week. We’ll be giving away two copies over the weekend via Facebook and Twitter, so get involved!

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

My physical limitations are often the least of my worries – other people’s attitudes are the problem

Our new report, The Disability Perception Gap, reveals the extent of the negative attitudes that are held towards disabled people – and how many non-disabled people don’t realise the scale of the problem.

Many people have responded to this, sharing their own experiences. In this guest blog, Chloe, who has cerebral palsy, talks about her life as a young disabled woman – and why she became a Scope Role Model to change attitudes.

I like to think that my impairment is a small part of me. In theory this is true, in practice it can be a very different story. Having cerebral palsy and a visual impairment does affect my life and always will do, yet the physical limitations are often the least of my worries. It is actually everything outside of what you would think that is the most limiting, with attitudes being at the forefront of it all.

Subtle prejudice is common, and can be just as frustrating

Negative attitudes towards disabled people are not always the more extreme things that may come to mind. It would be a lie to say disabled people are not faced with hate crimes and people being aggressive towards them. However, attitudes can be much subtler than this. From my own experiences it is so common for people to talk to the person I am with, even if it is about me!

The most recent example of this was when my PA was asked if I would like a copy of the menu in Braille, I was stood right next to her. I personally would not benefit from a Braille menu, but it is amazing the one was available. If the woman would have asked myself then the whole situation would have been perfect and incredibly accessible.

On the other hand, if they are talking to me it can come across as patronising or as if they know what is best for me. I fully appreciate that some people don’t know what to say, but why treat us like we are lower than you just because we have a disability?

Chloe standing in front of students, laughing
Chloe is changing attitudes through her work as a Scope Role Model

We’re seen as not capable of certain roles

I believe that current attitudes can also stem into the roles in society which we are able to play. Sure, we can be Paralympians, motivational speakers or disability activists. In fact I am extremely proud to hold of one these roles.

However, attitudes often limit us to these roles and society forgets we are capable of being their retail assistant, accountant or hairdresser. They forget we have dreams and aspirations just like them over the career we want. I understand that some impairments may limit roles we have to a certain extent but that’s for us to figure out – not to be told by members of the public.

Negative attitudes have made me doubt myself

These types of negative attitudes can have a significant impact. Despite attitudes being the opinions of others, it can make you feel incompetent and less worthy of certain opportunities.

On the other hand, at times it can be hard to justify your own achievements beyond ‘they only gave that to me because I’m disabled’. This is reinforced by the attitudes of other people. It is hard to overcome these views when you are faced with it every day and can be extremely damaging.

It can also lead to moments of doubt, even if this is completely out of character. I clearly remember struggling to walk up a school corridor because I had a cast on which was painful. Two girls, who were several years below me, walked past and for some reason I couldn’t help but be so disappointed in myself.

I’d just become Assistant Head Girl and I was so proud of this but couldn’t help thinking “How on earth are you good enough to be Assistant Head Girl, potentially having younger students look up to you, when you can’t even successfully walk down a corridor!”.

I have learnt that this internal monologue is not true at all, and yet I thought this because of the attitudes I am surrounded by. Fighting them away would have been near enough impossible if it wasn’t for my incredible support network.

Chloe smiles at the camera, with seated students behind her
89% of students felt less awkward about disability after attending a Scope Role Models session

I became a Scope Role Model to change attitudes

So, what is the next step? We cannot go on like this and something must change. In my opinion, improving attitudes can come about by challenging stereotypes which often are deep- seated within society.

We need to open our eyes to the reality of having a disability and that we are not as far forward as we believe. This includes the fact we can play a role within society, but also that having a disability can be hard and can be extremely challenging to live with at times.

Scope Role Model programme is working on normalising disability in schools around the country and I love being part of this. I don’t mind being asked questions by the students and I will be honest with them because this is the only way progress is going to be made. Not everyone has to share their story, but I choose to do so.

Why not see a disabled person as an individual who is just as unique as yourself? A person who is just as capable and who has needs that are just as important. Treat us the same as you would a family member, friend, work colleague or professional. With respect, humanity and belief.

Chloe is a student, writer, disability activist and Assistant Coordinator at CP Teens UK. You can read more of Chloe’s work on her award-winning blog.

Scope’s report is the start of something, not the end. We will be working to better understand how negative attitudes impact on disabled people, and how these can best be tackled.

There’s no single fix for this problem, and as part of our campaign for everyday equality for disabled people, we’d like to hear about your experiences and what you would like to see change.

Will you support our campaign by telling us your experiences?

I get treated differently just because I’m disabled, I’m determined to change that

Michelle was born with cerebral palsy and growing up she never saw herself as different. Then she went to a mainstream college and everything changed. People treated her differently and it really knocked her confidence. Rather than let it beat her, it motivated her to change things and she’s been raising awareness ever since. For cerebral palsy awareness month, she shares her ‘dos and don’ts of disability’.

I grew up going to a specialist school so everyone around me was disabled from nursery up until I was 18. Then I went to a mainstream college and that was a big culture shock. I’d never seen myself as ‘different’ – I was just me – but college completely changed my outlook on everything. People treated me differently and it really knocked my confidence.

Until then I hadn’t realised that being disabled can make you so segregated – you could tell that certain people just didn’t want to talk to you, they didn’t want to get to know you. People would either make mean comments or be overly nice because they felt sorry for me and I felt like I was fighting a battle every day. I just wanted to be treated like everyone else.

Woman in a car smiling

I’ve never disliked anything about myself but going to college made me realise that not everyone is going to be accepting and you do need to work harder just to prove that you’re a ‘normal’ person.

I think a lot of the time it’s because people just don’t understand. If they have grown up around disability or known someone who’s disabled, it’s not surprising. Up until recently, you’ve never really seen disabled people in the media so, when someone sees someone who’s a bit different from them, they’re not going to know how to act or what to say.

A lot of the girls I went to college with said they’d never known someone who’s disabled. All they had was this made up idea that disabled people are all the same. They’ve got these preconceived ideas and then they’ve never met anyone who’s disabled to prove that idea wrong.

My experiences at college completely changed my outlook and made me determined to change things. People need to be educated, people need to see disabled people in the media more. Then being around disabled people won’t be a big deal, because it will just be what they’re used to seeing every day. It becomes the norm. In the meantime, here are a few of my dos and don’ts.

Man pushing woman in a wheelchair. Text says 'the dos and don'ts of disability'

Do talk to me

I’m perfectly capable of speaking for myself but people speak to the person I’m with instead of me – even doctors. I’m sitting right here, you should have enough respect to talk to me instead of talking about me. Then, when I answer, they still don’t speak to me and it’s so frustrating because I’ve just answered you, you can see that I’m perfectly capable of talking to you but you carry on ignoring me anyway.

Don’t talk down to me

People talk down to you or act like you’re stupid. You’ll be out somewhere and people will go “Aw are you okay?” like I’m a child. No. I’m 28. I don’t need you to speak to me like I’m stupid. When people are patronising and treating you like you’re stupid, that can be just as damaging on your self-esteem.

Do take my word for it if I say I don’t need help

People often go “Do you want help?” and I say, “No I’m alright thanks” and then they just take over and do it anyway, not listening to what I’ve said. Sometimes, they don’t even ask, they just do it.

And definitely don’t push my wheelchair without asking

Some people will just push my wheelchair. I’ll be out somewhere and someone will go “Oh I’ll push you” and I’m like “No I don’t need you to do that”. You’d never pick someone up and move them around.

Don’t assume we’re all the same

A lot of people think if they know someone with cerebral palsy, I’m going to be exactly the same. And some people are like “Well you can’t have cerebral palsy because you can do this or you don’t do that.” I know best. Not every form of cerebral palsy is the same.

Do see beyond disability

In the media, people either don’t show disabled people at all or when they do, it’s solely focused on that. Yes, I’m disabled, but I am more than that. I’m a person first. Cerebral palsy doesn’t come before me as a person.

We’re just ordinary people, we don’t want to be treated any differently.  We might do things differently or have to adapt, but we’re just human.

For more dos and don’ts, watch Michelle’s film.

Letter to Louis: a mum’s story of her son with CP

“I’ve never quite known how to explain what our daily life is like. I wanted to write how it is in order to give others a greater understanding of disability and caring. And to be totally honest, I wanted to write something that would make people consider being Louis’s friend. So here is me introducing you: Louis, this is your story. Readers, this is my son.”

Fighter

Alison White’s memoir of bringing up her son Louis covers the first 18 years of his life. It’s written to him, even though he doesn’t have the capacity to understand his mother’s writing.

From the beginning Alison White is brutally honest. When she first sees her son in the intensive care baby unit, she thinks, “I would not have chosen you.”

The name Louis means ‘fighter’, according to the baby names book Alison and her partner Greg used. It proves to be prophetic. His first Christmas present is to be able to come off oxygen and to bond with his mother for the first time.

The things people say

One of the things that I found most shocking about the book is the callousness or perhaps carelessness of people’s reactions to a mother with a disabled child:

  • The woman from the parents group talking about how ‘perfect’ her own child is.
  • The nurse who calls Alison ‘Ermintrude’ when she brings her expressed milk to the intensive care baby unit.
  • “Look at him. That’s an apology, that is!” says another nurse.
  • From Louis’s own grandmother: “There’s something not quite right about him. He’s not like any baby I’ve come across before.”
  • The homeopath who attributes Louis’s cerebral palsy to his father not being present at the birth.
  • The shoe shop worker who says that it is not her company’s policy to sell shoes to people who cannot walk in them!

Celebrate every step

Scope used to have a child development tool called Celebrate Every Step. This was a way of marking the tiny developmental milestones that were missed by mainstream ways of assessing child development.

After so many battles, Alison begins to see the way forward:

“All those things that we take for granted like being able to walk, play, write, get dressed, wipe our bums, brush our teeth, tie our shoelaces, chew our food, blow our nose, lick our lips. You still can’t do any of these things. We help you to do everything and little by little, at a pace that is imperceptible, we make progress with some things. Other things will never come. The damage is done.”

Alison finds a music therapist from Nordoff Robbins who unlocks Louis’s love of music. Louis can sing his own name before he can say it. As Louis begins to express himself, his personality and his obsessions come to the fore. He likes to carry maps with him wherever he goes. His bedtime routine consists of his mother having to pretend to go for a bike ride before he can settle.

Presents of life

Louis’s birthday wishes become more and more eccentric: for his 10th birthday he asked for a Henry Hoover; for his next he wants an escalator! One Christmas he asked for a Soundbeam, an inclusive musical technology system used in sensory rooms which costs thousands of pounds. When his mother tries to explain that this is impossible, his response, which could almost be the motto of this book, is: “You could try.” Alison does try. She contacts Soundbeam who offer to lend a system over the Christmas holiday so Louis does get his wish: he gets a Soundbeam for Christmas!

18 plus?

For his 18th birthday, Louis and his mum get an unwanted present: no more respite.

“As you turn at 18, as we were told, are respite has been cut to nothing, gone. Yesterday you were a child and today you are an adult and everything will change with social services again but nothing has changed with you. You still need all of your care, but nobody seems to be able to tell us anything. We are not going to worry. We are having a party and your parties are known as the best.”

Letter to Louis by Alison White is published by Faber on 2 February 2018.

Win a copy of the book!

We have 10 copies to give away. To be in the draw,  post the things people say to parents of disabled children on our online community. 

Terms and conditions

Only one entry per person will be counted. The prize draw closes on 10 February 2018 at 10am. The winners will be chosen at random after this date and notified via social media. Books can only be posted to addresses in the UK and no cash equivalent or alternative prizes will be offered. This prize draw is not associated with Facebook or Twitter.

My message to employers: disability is not a weakness

Azar lives in London and wants to work in the financial markets as a currency trader. He’s well on his way, with a 2:1 in business management, but he feels that attitudes need to change if he’s going to be successful.

Past job interviews didn’t go well – employers would focus on his impairment which made him feel uncomfortable and lose confidence. He’s supporting our Work With Me campaign to ensure that employers see beyond disability and focus on his strengths.

I have cerebral palsy which affects my right side and movement. It’s not immediately noticeable but there are small things that could make a big difference for me in the workplace. For example, I can’t type, so I use software programmes where I speak and it automatically writes down what I’m saying.

I found it really hard looking for work. I always tried to hide my impairment but during interviews employers would ask “Do you have a disability? How will you be able to do the job?” which made me feel uncomfortable. I didn’t know how to answer it.

I felt like the odds were stacked against me

Getting rejected again and again, you feel like it’s because of your impairment and that made me want to give up. I couldn’t explain cerebral palsy confidently and it made me feel like it was more of a weakness than I strength. I had all the skills but I felt like I was being judged. It seemed like employers were thinking there will be other people who aren’t disabled who can do the job better.

Work With Me

There’s a lack of awareness and understanding. I feel like employers don’t know how to adapt to disabled people’s needs, they just don’t think about it. Companies should be open about starting conversations in a way that’s not off putting. Their attitude should be “If you have an impairment we’re going to provide you the support you need to prosper in this role.”

A million disabled people can and want to work, but they’re not being given the opportunities. I think campaigns like Work With Me can have an impact by helping more disabled people get in to work and show what they can do. Work With Me can also educate employers about what they can do to improve and show them that it’s not about disability, it’s about competency.

Scope storyteller, Azar, holds up a placard which says #WorkWithMe
Azar is supporting Scope and Virgin Media’s new employment campaign, Work With Me

My advice to others

Knowing that there’s a million disabled people who, like me, want to work but aren’t being given the chance, makes me feel so frustrated. It makes me more determined to prove to employers that disability isn’t a weakness. My advice to other disabled people looking for work is use your strengths and show employers that disability doesn’t define you – you can defy the odds.

I feel more confident taking about my impairment now and what I need to prosper in a company. I feel more sure of myself and my skills. To all the employers who are put off by disability I want to say: don’t judge me by my impairment, judge me on my skills and my experience, look at my track record. Cerebral palsy is not a weakness and with the right adjustments I can succeed.

Be part of making change happen. Find out more about Work With Me and share the campaign on your social media networks using #WorkWithMe.

We’ll be publishing a series of powerful stories, videos and photography over the coming weeks to highlight the issue so that we can secure everyday equality for disabled people.

“I thought I’d broken my baby” – Scope’s helpline helped me see a future

Families up and down the country turn to Scope for support in times of need. The information and support we provide can make all the difference, you can help us be there for every family by fundraising with us. With your help, we can be there for every family who contacts us.

Jenny found out her son Harry had cerebral palsy and didn’t understand his condition or how to support him. Here she explains how calling the Scope Helpline was the moment everything changed and how vital your support will be to families like hers.

Two years ago, my son Harry – who was five years old at the time – was diagnosed with cerebral palsy.

He’d been complaining of tiredness and pains in his legs. A physio told me he was a typical boy, being lazy. But I knew there was more to it.

Harry would also keep falling over, his feet turned inwards and there was other behaviour I couldn’t understand. Even the slightest change to his routine would result in a meltdown.

“I thought I’d broken my baby”

I had to fight to get an appointment with a consultant. When finally we saw him we talked for only a few minutes. He told us that Harry had cerebral palsy.

I asked, ‘what is it?’ and ‘how did it happen?’ He said I must have fallen during the pregnancy, which scarred Harry’s brain. That was that. We left without any leaflets or explanations.

I hadn’t fallen whilst I was pregnant, I knew I hadn’t. But, even with this in my mind, I burst into tears. I thought I’d broken my baby.

Jenny talks on the phone in her kitchen
Jenny turned to Scope’s helpline for support

Finding the support that we needed

I’m so thankful I found Scope’s helpline number. Straight away, I realised I was talking to people who understood. I could finally see a future because they could help me understand Harry’s needs and how to give him the help that he needs.

Scope have been an amazing support ever since that first emotional phone call I made. They understand cerebral palsy and they understand Harry. That’s invaluable to me.

With Scope’s help, we’ve adapted to Harry’s needs and so has everyone in his life. Harry is doing really well at school and we are looking forward to what the future will bring.

It isn’t just Harry’s life that’s better, it’s the whole family’s.

Harry, a young boy, plays with a Superman toy set
Harry’s future seems much brighter now

You can help ensure that we can be there for every single family that contacts our helpline, find out more about fundraising with us or call on 020 7619 7270.

Why we’re taking on the London Marathon for Scope

Vicky, Louise and Nina are running the London Marathon for Scope – “a charity close to our family’s heart”. In this blog, Vicky, her sister Mell and her nephew Moss, all talk about why raising money for Scope means so much to them, and why they are excited to take on this challenge! 

“My little sisters have decided to run the London marathon!”

They are raising money for Scope – a charity close to our family’s heart.

My eldest son, Moss, has cerebral palsy. Thanks to Scope’s support, and against the odds (prognosis was that he would never walk), he took his first unaided steps when he was almost four. To hold your child in your arms and be told that life would not be the same for him as it was for his peers was the hardest moment in my life. Scope gave us hope.

To be able to walk into school on his first day and be able to stand up in a bar and look at people in the eye when he was older – that was my goal. My son is now more independent than any other lad of his age I know. With the use of sticks he walked into his first day at school and he walks into bars on his feet often! To say I am proud of him wouldn’t even ‘cut the mustard’ (if that’s a real saying?)

This, I know was down to the support of Scope at the beginning of our journey. I am mega proud of my little sisters for doing this. I hope Scope’s support for parents continues as I honestly don’t know what we would have done without them.

“I’m so happy that my aunts are running for Scope”

Scope had a huge impact on my life. If it wasn’t for Scope and the encouragement from my mum I wouldn’t be able to walk unaided now. When I was a kid I was told I would be in a wheelchair for the rest of my life but that’s not the case and that’s down to Scope and my mum.

I’m so proud and happy  that my aunts, Vicky and Louise, are running for Scope. I didn’t realise they knew so much about how Scope helped me when I was growing up, so it’s great they are raising money for Scope. I work at Scope now so I really appreciate where the fundraising goes and how important it is.

I really hope to be there to support them on race day. My dissertation is due though so I don’t know if I can make it, but fingers crossed I can be!

Head and shoulders shot of Vicky and Louise smiling with a field in the background

“I’m really looking forward to marathon day”

I started running last February as I wanted to get fit after having my two children. I started the ‘Couch to 5k’ on my phone. This developed into entering 10k races and a half marathon with my younger sister Louise. Then we decided we wanted a challenge as I was turning 40 this year and we entered the London marathon.

Running for Scope was a natural choice for us because our nephew Moss has cerebral palsy. Without being supported by Scope we really believe he would possibly be in a wheelchair, rather than having the strength and determination to walk with his crutches. Scope also offered my older sister Mell the support she needed when Moss was growing. We met other families who benefited from Scope’s service too and have family friends who have also greatly appreciated the service Scope provides.

I’ve loved training for the marathon with my sister and our friend Nina has been a huge part of it too. It’s been challenging and tiring at times but we have all pulled each other along. When my legs are stiff and tired at the end of a run I think of my nephew and this makes me more determined and motivated to carry on and more proud of him. He is one totally amazing person.

I’m really looking forward to marathon day and running for Scope. Although I’m feeling a little overwhelmed about how many people are going to be there! We really feel that Scope are an amazing charity and we’ve all been working hard to fundraise so that they can continue the great work they do.

Want to help Vicky, Louise and Nina reach their goal? Make a donation on their fundraising page.

If you fancy taking on a challenge, sign up for 2018 or check out some of our other events!

No one expects to find out they have cerebral palsy at 60

Meet Paula, who contacted our helpline after learning she had cerebral palsy – at the age of 60. Until then, she had never received any kind of support.

In January 2015, soon after my mother died, my sister called me and told me I should see my doctor as there was ‘something I should know.’ I went to my GP and asked him to read me the medical notes from my birth. He told me that I had mild cerebral palsy.

I’m 60 years old, and I had known nothing about it until then.

My mother and I had not been in touch for 23 years, for many reasons. I will never know why she didn’t tell me.

There was more of a stigma around disability at that time, so maybe that was a part of it. Or perhaps she thought that because I didn’t need a wheelchair or anything, it wasn’t worth doing anything about. Sadly, attitudes still need to change.

Blaming myself

Not knowing about my cerebral palsy has made my life a lot more difficult than it really should have been.

My movements are awkward and slow, meaning I need extra time to do things. My speech also causes me difficulties. When I’m tired, it’s really hard for people to understand me – almost impossible if I’m exhausted.

Paula and her baby son
Paula and her son

But all my life I blamed myself for my differences, and thought I was just clumsy and slow. I drove myself into the ground trying to keep up at work, and that took its toll on me emotionally. When shown a job, it takes me longer to learn, and it often resulted in people getting annoyed with me.

I was never offered any extra support when I found things difficult. In one job, my colleagues would go home after they had finished their work, leaving me to finish my part alone. A supervisor once said she ‘felt like shaking me’.

I always tried to remain positive and upbeat, but it had a huge impact on my self-esteem and confidence. If I had known more, I think I would have stood up more for myself. And I could have asked for support with things such as my speech, which would have made a big difference for me.

Scope’s support

I rang Scope within a fortnight of finding out, and they sent Olli, a regional response worker, out to visit me. I thought she would have no time for me, but she came out the very same week. She said she had never met anyone who didn’t know about their condition until my time of life.

Olli has been fantastic, and having her information, advice and support has been excellent. With her guidance, I have sought out speech therapy, which has greatly improved my speech. I have also had physiotherapy and seen a continence nurse, and I have had rails installed in my bathroom.

Paula and her husband
Paula and her husband, who have just celebrated their Ruby wedding anniversary.

Life today

And just having this knowledge about myself has changed my life for the better. I feel much less agitated. I always felt I needed some kind of help, but I never knew what I needed or who to ask. I’m finally making up for lost time. I’ve now got the confidence to try new things; I go to Tai Chi, I swim and I am a bell ringer.

 I feel the things I have had to deal with in life have made me focused, determined and positive. I’m more aware of other people’s problems, and how they are feeling.

Excitingly, I’ve recently become a grandma. This got me thinking about my own experiences and how much things have changed. What happened to me – my disability being brushed under the carpet – I wouldn’t want to happen to any child today.

Our helpline is only possible thanks to donations from supporters.

You can help us be there for disabled people and their families by donating to Scope today. Your gift can support services such as our helpline, offering vital information and guidance to those who need it – whether 6 or 60.

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.

 

“This child is spastic. Take her home.” – Disability History Month

Dr Lin Berwick MBE, counsellor, lecturer, journalist, broadcaster, homeopath, Methodist preacher is 66. She is one of a number of older disabled people who contributed to the Disability Voices website at the British Library Sound Archive as part of Scope’s Speaking for Ourselves project.

For Disability History Month, Lin remembers how a doctor labelled her as ‘spastic’ and encouraged her parents to have another child. 

“This child is spastic. Take her home…”

When I went blind

Lin went to a school for physically disabled pupils. When she lost her sight, she was bullied.

“When I went blind, the kids at the school were really nasty and I went through some horrible jeering and bullying, and people laughing at me because I walked into things. You know, I went to walk through a door that had glass panels and, because I could see the light through I thought the door was open, and of course it wasn’t. I sort of smashed my face, and then I walked into a brick wall and things like that, and hit my face again and I had tripod sticks poked into, and walking sticks poked into my face and handfuls of mud rubbed into my face, and kids saying ‘Can you see that, then, Berwick?’ It was horrendous at a time when you’re really frightened, because you’ve now suddenly got a new disability which you don’t know how to handle.”

‘Telephonist required’

Lin Berwick on phone
Lin Berwick on phone

Finding a job was another barrier Lin had to face. 

“When I got to the bank, it was one of these banks with these horrible revolving doors, which wasn’t easy, going through on a pair of tripods. Eventually, I found my way into the bank, and made my way to the accountant’s office, and when he opened the door he, said, ‘Oh, I know they told me you were disabled’, he said,’ ‘but I didn’t realise you were that disabled, but you might as well come in and sit down anyway’, and I thought, ‘God, this is a really good start to your first job interview!’ But I thought, ‘Well, I’m here. I’ve got one chance, so I might as well really go for it’, and he took my mother around the bank, showed her some of the obstacles, and we came back into the office and we started to talk about the work, and he proceeded to ask my mother every single question about my training.”

Becoming a Methodist preacher

God's Rich Pattern: Meditations for when our Faith is Shaken
God’s Rich Pattern: Meditations for when our Faith is Shaken

Even in her spiritual life, Lin faced prejudice when she tried to follow her vocation and become a Methodist preacher.

“The Secretary of the meeting said, ‘I think we’re going to have a problem with you.’ I said, ‘Oh yes! Why’s that?’ ‘Well, due to your disability, I don’t know how you’ll cope with the public speaking,’ so I said, ‘Well, as someone who’s done over 300 radio broadcasts, I don’t think you’re going to have a problem.’ ‘Oh,’ and he said, ‘And I don’t know how you’ll cope with the academic study.’ I said, ‘Well, I have ‘O’ levels, and I have the equivalent of a degree in Psychology.’ He said, ‘Oh, you can learn then!’ and I thought, ‘God, if this is the kind of prejudice I’m going to get, this is just amazing stuff,’ and I said, ‘Yes, I can learn’ and he said, ‘And then we don’t know how you’ll cope with the access to the church buildings,’ and I said, ‘There, I’m prepared to admit you have a problem, but maybe together, we can work at it.’”

Listen to Lin’s life story on the Disability Voices website.

Books by Lin Berwick

Find out more about the Lin Berwick Trust.

Read the rest of our blogs for Disability History Month