Tag Archives: cerebral palsy

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

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.

From callipers to climbing Ben Nevis – Disability History Month

Mountaineer and writer John Hawkridge is 68. He 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, John remembers when he could run as a child and how in later life he tackled Ben Nevis.

Wearing callipers

John as a boy sitting on a step
John as a boy sitting on a step

Unfortunately for me I got selected to be fitted with iron callipers. So all of a sudden you find yourself in leg irons, and you know from being able to run, they’ve put you in these leg irons, and you can hardly stand up, never mind run. And they put you in them, and they tighten all the leather straps on you when you’re in. You know, it’s basically, it’s just a form of torture; they’re just forcing your joints against what they want to do. And so, you find yourself, you might be wearing your callipers ‘x’ amount of hours a day. Now bearing in mind I could take these callipers off and run, and run, hop, skip and jump, that weren’t something that I enjoyed at all.

Climbing Ben Nevis

John Hawkridge
John Hawkridge

By seven o’clock I was out and away, and heading up Ben Nevis. Initially there was no one else about, and I had the route to myself, but as time progressed it wasn’t long before people started overtaking me. Throughout the day I made really steady and positive progress, and up through a place known as ‘the Red Burn’, and then the massive, steep zigzagging path that went to the sort of summit ridge, or plateau, and then finally across this, where there were still snow and an ice field to be crossed towards the summit, and I ended up, I arrived on the summit about four o’clock. There were a few people there, and one that stood out was an American chap who, when he saw me coming, started dancing up and down, shouting, ‘What the Hell? I’ve flogged my so-and-so guts out getting to the top of this mountain, and what do I find when I get here? A so-and-so cripple. You’ve ruined my day.’ At which he screwed his stars and stripes up, shoved it back in his rucksack, and stormed off muttering to himself; ‘And I don’t know how the hell I’m going to get back down again,’ and I leant over and shouted to him, ‘That makes two of us!’”

Hear about John’s descent of Ben Nevis with broken walking stick and boot.

Rock-climbing films

In the mid-1970s I’d bought a good-quality Super Eight Cine Camera and had made films of some of the walks that I’d done and rock climbs; the two walks which I’d filmed being the Three Peaks of Yorkshire and the Dales Way – a 100-mile walk from Ilkley to Bowness on Windermere, and also I had some quite good shots of me rock climbing at Ilkley and Brimham Rocks.

In the late seventies I had been showing these films at various places, you know, if I had to entertain anywhere I’d take along me Cine and compiled a film and showed these films. And the fact that I’d been doing these activities had come to the attention of Yorkshire Television who sent a producer/director out to see me, with a view to making a film, and I remember well as he watched this Cine film, an half-hour film that I’d put together, and when it had finished he says, ‘This is absolutely fantastic, this is absolutely brilliant,’ he said, ‘but unfortunately we could never show this or make a film about this, because the public wouldn’t be able to take it…’

Climbing Everest

Books by John Hawkridge

Uphill All The Way book cover
Uphill All The Way book cover

His first book Sticks and Stones was published in 1987. This was followed by Uphill All The Way in 1991.

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

Find out more about Disability History Month on our website.