All posts by Hayley Tomkinson

I'm in the Stories team at Scope.

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.

Great to see disability represented at the Oscars, but how far do we still have to go?

Last night, the Oscars results showed that we are moving forward when it comes to representation of disability in film. The Shape of Water – a film featuring a disabled character and uses sign language – won best film (although a disabled actor playing her would have been even better). The Silent Child – which stars a six-year-old deaf British actress and tells the story of her struggle to communicate in a hearing world, won best live action short film.

In this blog, Max Dean, a film lover and writer, reflects on the history of disability in film.

As a fan of horror films, I realise that the representation of disability in this particular genre are, largely quite negative; the most recent and controversial case being M Night Shyamalan’s Split from last year starring James McAvoy.

Before and after the release professionals with patients of dissociative identity disorder (DID) expressed understandable concern over the stigma that the film could place with those living with the condition. Yet, just like Psycho’s portrayal of a real-life mental-health condition, the portrayal of DID in Split is nonsense. People with DID are no more prone to violence than any non-DID person.

Disability in historical cinema

In contrast, one of my favourite films of all time; James Whales’s Bride of Frankenstein (1935), has arguably, perhaps one of the most touching scenes with a disabled character in the history of cinema. To me, it perfectly captures the loneliness that those in the disabled community can face due to misunderstanding across our society and its preconceived perceptions.

In this sequence our main character, Frankenstein’s ‘monster’ comes across an older man with blindness who is living on his own in the woods, shunned by the villagers we see in other scenes who chase the ‘monster’ across the countryside. He befriends our main character. They provide each other with the one thing each has wished for; a friend and companion. The ‘monster’ himself is similarly treated as a monster due to his appearance and supposedly limited and baby like intellect. It is only when villagers come into his home and confront them both that he loses his friend.

In this context, disability is rather refreshingly, seen as a virtue and played in a positive and indeed, very humane light.

Disabled people must be given a genuine voice

A more recent film which has comparable character arcs in its story to the Bride of Frankenstein is The Shape of Water. Due to Sally Hawkins’ excellent performance this has won plaudits as a breakthrough in the cinematic presentation of disabled characters. With this however, it also raises the question of non-disabled actors playing disabled characters.

To show that cinema really embraces disabled people as equals, the film industry must therefore give disabled people a genuine voice. This can be achieved by not only giving more roles to disabled actors but the directors chair itself. Yes, these roles can be sympathetic, but they also must be truly empowered characters.

That would be a truer sign than any, that, we as a society have truly changed to embrace disability and recognised the worth of everyone in it.

What are your thoughts on this year’s Oscar winners? Start a discussion on our online community.

“I have problems with my mobility and I’m at home every day. As a result, my energy bill has shot up”

Our new report, Out in the cold, reveals the high costs many disabled people face for their energy. 

Over a third of disabled people say that their impairment or condition has an impact on their energy costs. Many disabled adults have worried about paying their energy bills, and many disabled households are living in fuel poverty. 

This follows our research published last week which found that on average, disabled people face extra costs of £570 a month related to their impairment or condition.  

Paying more for energy is something that Lynley knows all too well. When she became disabled her energy costs shot up. In this blog, Lynley talks about the impact this has had on her life.

Three year ago I suffered a sacral spinal fracture due to early-onset osteoporosis, which damaged nerves and has left me with permanent neurological pain.

Before I became disabled, I never gave the heating a thought. It wasn’t on very often, but things are different now. I have problems with my mobility and I’m at home every day. As a result, my energy bill has shot up. 

When you can’t move around, you feel the temperature much more and being cold affects my pain levels enormously. I have to wear extra layers of clothing to keep warm and I need the heating on constantly.

I also have an electric blanket for my bed and an electric heat pad which I use to help with my pain. I use electricity to charge my electric powerchair which I need to use to get around outside the house. This needs charging frequently so it’s another additional energy cost.

My bill is so much higher than before. Coupled with the loss of my income as a teacher, this has made ‘getting by’ very difficult. Personal Independence Payment (PIP) helps but there is very little money left over for anything else. I have to prioritise heating so that I’m not in pain.

Life is now very different

Since becoming disabled, my living standards have changed dramatically. I was a professional secondary school teacher in a large comprehensive and was managing five members of departmental staff. I had a large amount of disposable income and enjoyed a fairly busy social life. Things are now very different.

I’m unable to work and now try my best to manage on my benefits  and my small pension but it is very difficult sometimes. Energy costs take up a substantial portion of my income. It’s even harder where I live because we are unable to get mainstream gas and have to rely on oil central heating which is extremely expensive.

Any kind of social life is extremely difficult, holidays are a luxury and disposable income is now virtually non-existent.

What would help

It’s not fair that disabled people who need more energy and who might be on lower incomes  have to meet these extra costs themselves.  There should be more support and awareness. I haven’t received any form of financial help with my energy costs.

Benefits like PIP are there to supposedly fill the gap but it is insufficient to really make a difference. I would like to see a different energy tariff applied if there is a disabled person within the home, much the same as the council tax rebate we are eligible for.

That would make a big difference to my quality of life.

Help us to get people talking about the extra costs. Share our report on Facebook  or Twitter using the #ExtraCosts

We also have information about support with your fuel bills

“I’m 22 and financially screwed” – help us tackle the disability price tag

Our new report The disability price tag highlights how disabled people on average face extra costs of £570 a month related to their impairment or condition. Many disabled people have shared their experiences of extra costs with us, and the impact that this has on their lives. It’s an injustice that needs to change. In this blog, Piers, a student in Wales, shares his experience. 

I’m currently studying for a Masters in Physical Oceanography. Being at university, surrounded by my non-disabled peers, has really highlighted the sheer amount of extra money that I have to spend, just because I happen to use a wheelchair.

“I’d say that every month I have an extra cost of about £1300 compared to my non-disabled friends.”

Firstly, my wheelchair itself was incredibly expensive and I had to pay for that myself. The wheelchair offered by the NHS was unsuitable for my needs, so I had to pay over £4,800 for one just to be able to get around and go to lectures just like everyone else.

On top of that, on average, I spend another £300 a month replacing parts and maintaining the chair. Even with this upkeep, it needs to be completely replaced every three or four years.

My housing is also more expensive than my friends – the only accessible student housing available is £110 per week, whereas friends of mine pay as little as £40 a week for similar housing.

Travel costs are increased due to the unreliability of public transport, the nature of hills in North Wales and the location of my lectures. I have to spend about £400 a month on taxis just to get around.

Food costs are also higher. I require easy to prepare food, either pre-chopped or in small quantities. My friends can buy items like pasta in bulk or do a large shop and carry it home. Unfortunately as a wheelchair user, it’s really difficult to manage more than a small basket of items whenever I go shopping. So this can increase my monthly bill compared to my friends by an extra £150.

Related to that, because so many shops aren’t accessible, I have to order a lot of the things I need online and get charged for postage. It may not seem much per item but all of those payments add up over the year.

Man holding a basketball on a court playing wheelchair basket ball

Financially, I’m screwed

My income each year is decreasing. Even with a student loan, Disabled Students’ Allowance and Personal Independence Payment (PIP), I still face a monthly shortfall.

It plays havoc with my social life because I can’t afford to do much, and if I do anything I’m worried about its cost. I have to take almost every freelance opportunity to earn any money I can to try to keep myself afloat, which impacts on my studies.

It’s socially exclusionary as well because my friends stop asking me to go do things with them because they assume I can’t afford things, which means I do even less.

Basically I’m 22 and financially screwed. It’s almost impossible to get a part time student job just because I use a wheelchair. I’ll be leaving university with at least £130,000 debt.

Man on a beach in a wheelchair next to a sign that says 'seating on promenade prohibited'

What needs to change

Firstly, businesses have a huge role to play. I’d love it if the items I needed to live independently weren’t extortionately priced. Companies know that as a disabled person I need the item so they can charge whatever they want. And there should be no delivery charge or a minimum spend for disabled customers.

There should be increases to PIP so it’s in line with the reality of these extra costs and investment into accessible housing so that it isn’t a quality that increases prices of housing astronomically. I also want to see the NHS bespoke wheelchair service restored and free NHS treatment – this would greatly reduce my extra costs.

Related to this, there’s the issue of employment. Extra costs aside, people rely on employment for financial security, yet there are many barriers to employment for disabled people – employers’ attitudes and discrimination being one of them.

Help us tackle the extra costs faced by disabled people. Find out more about extra costs, then share our report on Twitter or Facebook.

You can also read more stories or share your own experiences in our extra costs discussion on the community.

Why BBC Class Act is an exciting step forward for disabled actors

BBC Class Act is a nationwide development programme which aims to support and raise the profile of disabled actors. Last week, we were lucky enough to attend the launch party and talk to some of the talented people involved.

On Monday, we shared a blog about Silent Witness and how amazing it is to see better representation of disability on screens, as well as a variety of exciting roles for disabled actors. We want to see more of this, which is why we’re fully behind the new BBC Class Act programme.

Last August, the BBC launched a nationwide search for talented disabled actors. From over 350 audition tapes, 32 people were were selected to attend an intensive three day skills workshop led by BBC directors. The actors were given lessons in everything from audition and camera techniques to help with their show reels, with the aim of improving their chances of being cast in more roles. At the launch, Piers Wenger from the BBC said:

“I hope the talent you see encourages you to consider disabled talent for a manner of roles. It’s crucial that all of us in the industry work collectively to nurture and include disabled actors so that we can see increased representation on our screens.”

Carly Jones, one of the talented actors who took part, tells us why this is so important to her

Carly sat on the sofa with a union jack pillow

Before this, I’d accepted that acting wasn’t my destiny

Before I became an Autism advocate, I was an actor. Autistic people, like me, have what many professionals call “obsessions” and what the kindest professionals call “special interests”.  Mine was definitely acting.

Aged four, I would be gently placed behind the sofa every time I stood in front of my parents’ TV, wanting to be the performer. As soon as I could read, Teletext became my very first auto cue!

This led to being Mary in the school nativity, attending Ravenscourt Theatre school as a teen and eventually, becoming a frustrated actress in my 20s, snatching occasional talking parts in a sea of supporting roles.

Chasing this dream wasn’t compatible with a busy life as a divorced mother of three daughters, two of whom are also Autistic.  So I decided to put my “special interest” into a box.

It was hard. I always felt more comfortable on stage than I did in everyday situations because I knew what I was meant to say and was prepared for the reply. But I accepted that acting wasn’t my destiny and moved on.

Carly looking to the side, against a dark background
Carly had put aside her dream of acting, until she took part in BBC Class Act

When I saw the BBC Class Act advert, my instant thought was “Ah I wish this had been around when I was younger” and I got on with my routine, but kind friends kept nudging me and eventually I thought “Blow it, I’ll audition!”

When I had a quiet hour at home alone, I taped my audition and nervously posted it “unlisted” on my YouTube channel. I planned to remove it later and never think about it again, but by some twist of fate, I was chosen!

Disabled actress Carly wearing sunglasses and a top that says autistic girl power

The course felt like a celebration of diversity

On the first day, I was pleasantly surprised by how different we all were. There were actors with all sorts of different impairments. Also a large percentage of BBC staff and organisers were disabled – something which I naively didn’t expect.

We had three action packed days. We auditioned, did camera work, filmed our scenes and showcased our work to our directors. Surprisingly it was not half as terrifying as I expected! The subconscious worry that this was just a box ticking exercise was quashed – this event really showcased a genuine desire for change and a celebration of diversity.

Truly it was easy to forget that we were a group of ‘disabled actors’. The actors there were extremely talented and it was clear that this initiative was set up to support talented actors, who also happen to be disabled. Rather than “let’s get some disabled people and help them act”.

I am so grateful for the three days of total support, encouragement and confidence the BBC gave me. I’m excited to see where this progresses, not only for my own personal goals, but for disability representation in the media as a whole! And maybe, just maybe, my Autistic “special interest” happens to also be a talent.

If you’re a disabled actor and you’d like to share your experiences of working, you can get in touch with the stories team.

Why tonight’s Silent Witness story is just what the industry needs

Disabled people and their stories rarely appear on TV or in films. Then, when they do, non-disabled actors are often cast to play the roles. That’s why we’re so excited about the latest Silent Witness story which will be broadcast on BBC One tonight and tomorrow.

The story – One Day – is told across two episodes and tells the story of Toby and Serena who are both disabled. They’re played by actor Toby Sams-Friedman and Rosie Jones, a brilliant comedian in her first acting role.

The story is gripping and emotional and while it’s billed as a story about hate crime, it also shines a light on a variety of issues that disabled people face, not to mention the seeming lack of urgency when it comes to addressing those issues. It also features an incredible performance from Liz Carr, a regular on the show.

Our helpline team were consulted on the script and on Tuesday, we were lucky enough to attend a screening of the episodes at BAFTA. In the Question and Answers that followed, we heard from Tim Prager who wrote the episode and actor Liz Carr. Afterwards we also chatted to Rosie Jones, who plays Serena in the episodes. Here’s what they had to say.

Rosie Jones:

“I wanted to do it justice for all the disabled people in that situation”

I come from quite a higgledy-piggledy background because I actually started behind the camera working in comedy and entertainment. Then I decided to do stand-up comedy, and along with that comes acting. I went for this role and somehow with no acting experience, I got it! So yeah, it’s my first acting job but I really enjoyed it.

The story is incredible, it’s hard going and it tackled a lot of tough subjects. I was quite worried that I wouldn’t be able to do it justice. But actually, I wanted to do it justice for all the disabled people in that situation. It’s incredibly important to tell this story, we need to make people more aware. And it’s so important that disabled actors are playing the roles. You can get the best actors but they don’t know what it’s like to be disabled. I do and hopefully I bring something to the role.

A women stands in a doorway looking worried
Rosie Jones, as Serena, in the first episode of One Day

Tim Prager, writer: On hiring disabled actors

“Just do it”.

I’ve known Toby since he was a little boy, I’ve watched him grow up, so it was easy for me to write that character. I have a son with cerebral palsy so it was easy for me to write Serena. What I was hoping to do with it, is to demonstrate that there is a place for all of us. That’s it.

There needs to be a will to tell stories about all sorts of people. Liz has been on the show for 6 years. The critical issue for me was that she was in it and she was a regular in it. There will always be a disabled character, whether [the story] is about disability or not. We’ll just put them in it because they can do other jobs.

[As a writer already in the industry], I’ve laid down the gauntlet and said I’ll work with disabled writers and bring them up to a technical skill level that makes them available to work on mainstream shows. And that’s what needs to happen, we need to get to a place where [all] people write all the shows that people watch.

It comes down to people saying, okay enough, let’s do it, let’s do it now.

Liz Carr, who plays Clarissa in the series:

“You’ve got the right people telling the story for a change”

It was so important [to do this story] because I don’t think that, other than on something like Panorama, I don’t know that we’ve seen some of these things on TV before.

These episodes are expressed as being about disability hate crime and really, they’re about the value we place on another human being.

Tim, comes at it from a place of experience as do we, as disabled actors. When we say ‘we should have better representation on TV’ it gets a bit boring – these episodes show why. And you’ve got the right people telling the story for a change.

There are lots of disabled people, people who championed this kind of episode and it’s a celebration. I guess the issue is, there’s so much to be done and we want it done now, I’m so impatient. Disabled actors have got to get more experience so we get there.

The performances across the board in this episode are stunning. The more we do it, the more people who work with us realise that this isn’t so bad.

Silent Witness One Day will be on BBC One at 9pm tonight – Monday 29 January – and tomorrow. 

Whatever the reason you’re having a ‘blue’ day, I’ve learned that talking is one of the best things you can do

Today, 15 January, is ‘blue Monday’ – the so-called ‘most depressing day of the year’.  For Josh, feeling ‘blue’ isn’t restricted to one day a year. In this blog, he writes about accepting his mental health struggles and why talking to people is one of the best things you can do.

For me, a lot of days feel like ‘blue Monday’. I have anxiety, depression and borderline personality disorder. I haven’t been in a good place the past few months. My anxiety sometimes makes it difficult to be happy. Over the years I’ve found good coping strategies. Talking to someone was one of the best things I ever did and now I encourage others to do the same.

I first started thinking about mental health at the age of thirteen. In the beginning there was no one to help me because I was just seen as a ‘problem child’. When I told teachers that I was struggling, they didn’t take me seriously. Once, I was in an exam and I told the teacher that I was feeling sick due to anxiety. They told me to “grow up and stop being pathetic”. That sent me over the edge. I felt alone for the first time. I failed the exam and I ended up in the hospital for an emergency appointment.

A turning point

That was a turning point for me. It happened in front of 180 people at school, so not only did it impact me, but it also impacted a lot of other young people who could have been going through similar things.

After that incident, everybody started treating me a bit differently and understanding me more. I realised that I was never going to get better if I didn’t talk to people about it. That was when I really started coming to terms with myself, my own needs and my own mental health.

Smiiffy, a young disabled man, smiles by a microphone

Destigmatising mental health

I’m very open on social media. I talk about mental health in a way that destigmatises it. I make people laugh, at the same time as showing that it’s a serious thing.

I wish people were less afraid of honesty. Even in music, a lot of things about mental health are censored. YouTube won’t promote my music because I’ve mentioned that I’ve felt suicidal or depressed, and Facebook won’t promote it. It really frustrates me. Especially when you see these platforms marketing things that you don’t need. And yet I can’t promote something with a positive message.

I often feel isolated. Sometimes I just prefer to be alone. I constantly feel alone in a crowd, even if I’m surrounded by good friends. I feel like I don’t fit in, which is really difficult sometimes. I posted that on social media. I wanted to start accepting my mental health and raising awareness, letting people know that it’s okay to talk about it and that there’s help out there.

Josh sits alone in a busy pub

Talking to people can help

In most families, there’s at least one person who will understand. The same goes for friends. I try to surround myself with good people. It might be difficult at first, but I’ve learned that talking will help in the long run. People will try to find a way to help you through hard times.

If you’re still not ready or not sure if people will understand, talking on social media can help things improve. You can be anonymous and sometimes that makes it easier to talk about the fact that you’re struggling, because you know that nobody will know who you are. It can also help you find like-minded people.

Letting people know that they’re not alone, and that there are other people there who are wanting to listen to them is incredible. I know from my own experience that it can be hard at first to talk to people around you, so I always say that people can talk to me. I’m very open on social media and lots of people do reach out.

Over the years, thousands of people have messaged me and said positive things and told me that I’ve helped them open up about their own mental health, which is incredible. For people who struggle to talk or feel like they’re not going to be heard, I want you to know that you will be heard, and that speaking out about what you’re going through can really help.

If you’re having a difficult time with your mental health, you can speak to your GP or contact organisations like Mind for support.

If you’d like to share your own experiences, get in touch with the stories team.

Connect with Josh on Twitter: @JoshSmiiffy 

What the past year has taught me about kindness

The start of a new year is often a time to reflect. When Pippa acquired a long-term condition at university she felt really isolated, so she set up Spoonie Survival Kits to reach out to other people with chronic illnesses. It has been a huge success and in this blog, she reflects on how the incredible kindness of others has changed her life.

If there’s one thing the past year has taught me, it’s that even the smallest acts of kindness can make the biggest difference.

I became chronically ill halfway through my time at university and it was a bizarre experience. Being surrounded by mostly non-disabled peers had me questioning not only what my future would hold, but my self-worth too.

While I tried to adapt, I couldn’t help but notice what a lack of support there was for people like me. There are hundreds of wonderful programmes and schemes for young people in hospitals, but what about the thousands of people at home, who are too unwell to leave the house?

Living with a chronic illness can be incredibly lonely. You quickly realise just how significant the small things can be.  Even on the more difficult days, a small gesture can remind you that you can do this. With this in mind, I set up ‘Spoonie Survival Kits’.

I wanted people to know they weren’t alone

‘Spoonie’ is the slang term for someone living with chronic illness. The kits contain treats and surprises aimed at brightening someone’s day and reminding them that they are not alone, that they haven’t been forgotten.

The kits are sold online and half of the sales money is donated to charities, with the other half being put back into sustaining and growing the enterprise. In the last two years alone, we’ve sent over 700 kits to recipients all over the world, and raised over £3,500 for various charities. And the demand just keeps growing!

Pippa holding one of the gift bags
Pippa holding one of the ‘little bags of happiness’

Creating a community of kindness

Spoonie Survival Kits has taught me a humbling amount about the value of selflessness and generosity too. Since the very beginning of the project, countless people, many of whom are severely unwell themselves, have come forward to ask what they can do to help.

If it wasn’t for the support and encouragement that I’ve received, I’m not sure if Spoonie Survival Kits would be what it is now. The kindness of others is quite possibly the best source of motivation a person could wish for, and something that I will never take for granted.

We’ve found that the people who receive the kits often want to support our work, creating a cycle of ‘paying it forward’ – when the kindness shown toward you, makes you want to show kindness towards somebody else.

A circle of hands wearing bracelets around the Spoonie Survival Kits logo

What keeps me going

Spoonie Survival Kits has been a game-changer for me personally. It  gave me back my sense of purpose at a time when my physical health made me feel pretty useless.

The most rewarding aspect of the project in my eyes, has been developing accessible and remote volunteering opportunities, inclusive of chronically ill people. Everybody who works on the project has a long-term condition, and we pride ourselves on offering volunteer agreements specifically tailored around people’s individual circumstances. Many of the items within our kits are handmade by talented crafters living with chronic illnesses.

Having such a talented and dedicated team of volunteers is just one of the reasons why I love being involved with Spoonie Survival Kits, and our kit recipients often benefit all the more from knowing that those behind the enterprise are in similar positions to themselves.

When I’m having a tough symptom day and feeling sorry for myself (and believe me, there are plenty of those days), it sometimes takes just a simple nudge to encourage me to keep going. My new year’s resolution is to continue ‘paying it forward’, and I wholeheartedly encourage you to do the same!

 Find out more about Spoonie Survival Kits and support the project. 

Do you have a story you’d like to share? Get in touch with the stories team.

Why I’m determined to make the world a better place for my daughter

The start of 2017 was a dark time for Christie. Her daughter Elise had just been diagnosed with cerebral palsy and without any support or information, Christie felt really alone. A year later, with a new positive outlook, she is a force for change. In 2018 she’s determined to keep making the world a better place for her daughter. In this blog, she shares their journey.

My daughter Elise was born prematurely and it was the worst time of my life. The doctors didn’t think she was going to make it but she did. I remember the first time she opened her eyes. After a month of being in hospital, we got to take her home and I was so happy.

The doctors said there hadn’t been any brain injury but she wasn’t developing as expected. So, after lots of meetings and nine months of waiting, we finally got a diagnosis of cerebral palsy, just before Christmas 2016.

I felt really alone

It was really overwhelming. I didn’t have any experience of disability and I thought it meant her life was over before it had even begun. I thought she’d have no future. I tried to be cheerful for her but my heart was breaking.

I didn’t want people to come over because I didn’t want questions. The first time I took her out in her wheelchair, I cried. I felt like everybody was staring at her. I had days where I just wanted to give up and lock us both away from the world.

That’s when I found out about Scope.

Christie holding up Elise in front of their Christmas tree

I’d been missing all the positives

I wanted to do everything I could for Elise so I called Scope’s helpline because I didn’t know where to start. They gave me so much information. I found out about what was available to us and the different equipment we could use. All these things have helped make life easier. But most importantly, Scope gave me so much hope.

They completely changed my perception of disability. It’s been a whole new life to get used to and I was just focusing on the negatives. Scope helped me to focus on the positives. I’d been missing them all.

You’ve just got to change the goal posts. Elise waving was a massive thing for us and, with her physio, she’s really building her strength up. She’s just got her Peppa Pig wheelchair which she loves and it’s given her so much independence – maybe too much as I recently found out in Asda when she kept wheeling off!

Christie on the sofa with Elise on her lap

I’m determined to change the world for Elise

I still worry every day about Elise’s future. I worry about people’s attitudes, I worry that she’ll want to join in with things but she won’t be able to. The world puts up so many barriers and you don’t realise it until you’re in that world. And it is a different world.

I’ve been sharing our story this past year and I want to keep going.  I feel less alone knowing that there is a community out there and people who care, people who’ve been in this situation.

We’re in a much better place this Christmas but life is still much harder than it needs to be. There should be more support but there’s not and accessibility is a big problem. Just because you have this diagnosis, doesn’t mean you don’t deserve a chance.

This year I want to keep changing attitudes about disability, I want to make things more accessible, I want to give Elise everything she needs – I’m determined that nothing’s going to stop her!

I started a Facebook page called Elise Smashed It. I want everyone to see what an amazing little girl Elise is. I hope it raises awareness and changes perceptions about disability. I want to help other parents too and show them that there is hope. It might not be the life you were expecting, but it’s not the end – it’s just the start of a different life and you’re not alone.

These are my goals and that’s what I’m going to focus on this year. I hope you’ll join me.

Too often, disabled people and their families struggle to access the support and information they need. Attitudes towards disability can be a problem too.

Christie shares her story because she wants to change that. Please help by getting involved with our What I Need To Say campaign and following Christie and Elise’s journey on their page Elise Smashed It. 

I’m a disabled person and I’ve contributed to the economy for 43 years – the Chancellor’s comments feel personal

Graham is Scope’s Engagement and Participation Manager. As a disabled person himself, with three disabled children, he had a strong reaction to Philip Hammond’s comments about productivity and disabled people. In this blog, “after a full day to calm down and sleep on it”, he responds and shares some other reactions.

It’s not based on any evidence

Firstly, as Scope colleagues and many others have said on social media, this statement hugely undermines the Government’s commitment to getting one million disabled people into work.

This wasn’t an off-the-cuff remark by Mr Hammond during an after-dinner speech – it was made in a formal Parliamentary committee meeting and broadcast to the world. So, apart from the slap in the face to working disabled people, he is contradicting Government policy.

His statement is not based on any evidence that anyone knows of. I’m extremely pleased that Scope has called out both the Chancellor and the Prime Minister on this slight.

I’ve contributed to the UK economy for over 43 years

Secondly, it feels quite personal. I’ve had my impairment since I was  a child and have worked continuously (apart from study breaks) since age 17 when I joined a press agency in London as a trainee journalist.

I’ve since worked as mental health support worker, probation officer, supported housing officer, bookseller, policy wonk and project manager. During this time I haven’t avoided paying my income tax and have contributed to the UK’s economy for over 43 years. So being labelled as a problem for  productivity would be a joke if it wasn’t so serious.

I worry for the next generation of disabled people, including my son

Thirdly, I worry for the next generation of disabled people. My youngest son is leaving university in a year or so, and my daughter has worked and has paid taxes for several years.

Despite my professional and personal campaigning on the inclusion of disabled people for 20 years or more, it is very clear we have a whole lot more to do if senior politicians still see us as drains on the economy and uninvestable. We need to be seen as active, empowered citizens.

And in addition to this novel stance – being seen as non-productive – the framing of disabled people as inherently “vulnerable” is another barrier that needs dismantling. I’m confident that Scope will continue to challenge received and dated ideas that diminish disabled people, and really promote everyday equality in all its senses.

It’s not just me who’s outraged, here’s what other people have told Scope

Laura via email:Laura walking with her guide dog

“I am disgusted that a man in his position could say such a thing. We have enough issues to face daily without comments like that.

Every day I make a contribution to society along with so many others. These were very hurtful comments to read as I was getting up, getting ready and travelling to work!

I am pleased to see disabled people and organisations have pulled together today.”

 

Liam via Twitter:

“I just felt disappointed and confused, to be honest.Liam wearing radio headset, smiling at the camera

Aside from being derogatory, it was also a bizarre statement to make when the disability employment gap remains stagnant.”

 

 

Shona via Twitter:

“It’s just reinforcing what we already know, this government thinks disabled people are a problem.Shona in her wheelchair in front of a fence and a park

What is even scarier is the government knows they can get away with saying things like that because they’ve created a society that sees disabled people as lesser.”

 

If you want to read more reactions to the Chancellor’s damaging and inaccurate comments, check out Scope’s Twitter moment. 

Scope storytellers also shared their views in the media:

Scope has written to the Prime Minister asking her to clarify her position and called on the Chancellor to withdraw his comments. We’ve also explained why his comments are damaging and inaccurate.

What are your thoughts on the Chancellor’s comments. Share what you think on Twitter or Facebook using the #EverydayEquality.