Disability in Britain: Then and Now… in statistics

Twenty years ago, we voted to change our name from The Spastics Society to Scope. On the day of the launch, we released the first of a series of reports called “Disabled in Britain: A World Apart”. They were based on what was at the time, the largest survey ever conducted of disabled adults in the UK. The reports found that many disabled people felt that they were living in a world apart. As an example, nearly eight in ten disabled people said that they often felt excluded from enjoying things that other people take for granted. While we don’t have directly comparable data, we have gathered available evidence from our own research and other sources, to get a sense of what life was like in 1994, and how it is today. Here are the stats: Infographic

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Twenty years on: Why I campaigned for The Spastics Society to change its name

Valerie Lang was the first disabled woman on the executive committee of Scope, then called The Spastics Society. She was heavily involved in the decision to change our name to Scope in 1994. Valerie is 74 years old and is still a member of the Scope Assembly. Here she talks about why Scope decided to change its name from The Spastics Society twenty years ago.

Valerie with Mum
Valerie with her Mum

I am one of the people who pressurised The Spastics Society to think about a new name. For some years, I was banging on about the word “spastic”’ and the fact that it had come to be used as a noun. I felt people saw us as “spastics” and not people. “Spastic” was a school playground term of abuse. ‘Oh you stupid spastic’ was thrown towards anyone who was considered a bit different. I’m not surprised that “spastic” became a term of abuse. To a child, someone who looks like me looks odd. We move differently, we have very mobile faces and we can sound very odd. People have to listen properly before they know what I’m saying. Children pick up and laugh at people who are different, they are quite conformist. I find, on the whole, children aren’t frightened of me when they are under the age of two or three, but somewhere between the ages of two and four, they develop an idea or concept of what people should look like. They begin to recognise difference. The first reaction is usually fear and the second reaction is to laugh to cover the fear.

Valerie Lang graduation
Valerie graduating

I even heard public schoolboys in Dulwich College calling each other spastics. If Dulwich College can’t teach its students to think about words, who could?! I wrote to the headmaster and he said he couldn’t control what his boys said out of the classroom. I just felt it had become unacceptable. I thought it was damaging to us, as individuals. It was a well-known term of abuse and I thought disabled people had enough to cope with without that. I felt that anything that allowed people with cerebral palsy to be viewed as a condition or type, rather than as an individual, was to be got rid of. But back then, a lot of people didn’t want to change names. They liked The Spastics Society and they felt safe with it. I must have been banging on about this for 5 or 6 years before the vote to change our name. Other people were also spearheading the campaign, including Bill [Hargreaves, Scope’s first disabled trustee] who gave a fantastic speech at the charity’s Extraordinary General Meeting. ValerieThe name “Scope” was chosen because it is value and judgement free. It doesn’t stand for anything. It would be more difficult to turn it into a term of abuse. At the time of the name change, we did a huge amount of publicity saying we were still the same organisation. We had a strap-line saying “formerly The Spastics Society” for a year after the rebrand. I actually think this strap-line was dropped sooner than it might have been. I have to admit that people have not learned to recognise “Scope” in the way we hoped they would. I sincerely hope that it will be very many years before we have to change the name again! But from the point of view of choosing a name which is not a playground term of abuse, and which we felt would not lend itself to such use, I believe we had no choice.

Twenty years on: When I joined a newly named organisation called Scope

Writing this blog is going to make me feel very, very old.

Ben Elton with a Scope t-shirtIn 1994, I’d been out of work for 2 years on invalidity benefit (which then became incapacity benefit), but I wasn’t sure I wanted to work for The Spastics Society. It sounded old-fashioned and medical, and there were lots of spastic jokes from my childhood. (Even today if you Google Joey Deaconit will helpfully suggest “Joey Deacon jokes”.)

The promotion from ‘invalid’ to ‘incapable’ hadn’t satisfied me so I was still looking for work. When the Spastics Society became Scope, I decided to apply for its graduate scheme.

My first day was the Monday after Scope’s launch, which had been attended by up-and-coming comic Ben Elton and wispy-haired Minister of Disabled People William Hague.

Minister of Disabled People William Hague at 1994 launch of Scope
Minister of Disabled People William Hague at 1994 launch of Scope

Everyone was exhausted after two years of consultation and preparation for this major event.

The press attacked the charity for political correctness and throwing away a well-known brand. In some ways, it was just correctness. The Spastics Society was never just for people with spastic cerebral palsy, only one of three types of CP. When founding trustee Bill Hargreaves said, “I am a spastic”, it was medically inaccurate (as he well knew) as he had athetoid cerebral palsy.

“What does Scope mean?” asked the critics. The Oxford English Dictionary says, “The opportunity or possibility to do or deal with something”- it’s fair to say that this idea hasn’t gained as much traction as we might have liked. People still ask what does Scope stand for, thinking it’s an acronym. However, despite Matthew Parris’s assertion that people would call disabled people ‘Scopers’ (instead of ‘spastic’) as a term of abuse, I have never heard it.

Although it still used from time to time by high-profile Americans, ‘spastic’ as a term of abuse has become less popular in Britain. If for no other reason, less name-calling and abuse of disabled people justifies us changing to Scope. On top of which, more companies wanted to be associated with us and, more importantly, our name has become less of a barrier for disabled people and their families wanting to use our services.

If ‘spastic’ has become less used over 20 years, lots of new words have come into being. Scope began to use the word disablism in 2002 to describe discrimination against disabled people (a word coined by the disability rights movement many years before but still not discovered by Microsoft’s spellcheck).

Twenty years ago, these thoughts would not have been a blog (1997). You wouldn’t have been able to Facebook (2004) or tweet it (2006).

And there wouldn’t have been a 20-page Kindle (2007) e-book about the story of our name change either.

That’s enough new words – I must get back to twerk.

Disability in Britain: Then and Now

Twenty years ago, we voted to change our name from The Spastics Society to Scope.

We dropped a word which had become a term of abuse for disabled people. We chose a new name, “Scope”, to reflect our belief that a disabled person can achieve anything.

To mark the twentieth anniversary of this decision, we’ve been asking how far the lives of disabled people have changed in this time.

We’ve analysed data from 1994 and today. Check out our infographic and data blog.

We’ve also spoken to people involved with the name-change, disabled people, and have received contributions from well-known disabled figures from the words of sport, arts and media.

The decision

Valerie Lang, the first disabled woman on the executive committee of the Spastic Society:
“I just felt it had become unacceptable. I thought it was damaging to us, as individuals. It was a well-known term of abuse and I thought disabled people had enough to cope with without that.” (Read Valerie’s blog about the name change)

Richard Brewster, who was in charge of communications at the time of the name change:
“In the build-up to making the decision to change the name at all, a defining moment was when we saw the research that showed that young parents of disabled children were not associating with The Spastics Society… What the research said was that our future was walking away from us.”

The aspirations of disabled people are higher than ever

Julie Fernandez, actress, producer, campaigner When I meet and talk to young disabled people today… I can see that they have very different attitudes to say, twenty years ago. We have legislation now to support the rights of disabled people both at home and at work.  There are more accessible ramps, more disabled changing rooms in shops and lower reception desks in offices. It is wonderful to see how much more confident young disabled people are today as they expect equality and rightly so.

Julie Fernandez, actress, producer, campaigner:
“When I meet and talk to young disabled people today… I can see that they have very different attitudes to say, twenty years ago. We have legislation now to support the rights of disabled people both at home and at work. There are more accessible ramps, more disabled changing rooms in shops and lower reception desks in offices. It is wonderful to see how much more confident young disabled people are today. They expect equality and rightly so.”

Valerie Lang:
“Young disabled people today expect and demand the right to have access to things these days, that when I was growing up, we would have been grateful for.”

Sascha Kindred holding a medalSascha Kindred, six-time Paralympic champion:
“I experienced quite a lot of name calling back in school, but I always had my twin brother there to support me so it seemed easier to deal with.

“I definitely believe attitudes have changed since then as when I go back to schools now to speak about my experiences as a disabled athlete, the children are genuinely interested and I know a lot of other kids with disabilities have increased opportunities and facilities compared to my time at school. I still think we need to educate people further though as this will continue to increase awareness of the challenges people with a disability face every day.”

Alice MaynardAlice Maynard, chair of Scope:
“The big change for disabled people in the last twenty years is that we have higher expectations for our lives than ever before. That’s mainly down to disabled people’s campaigns. Change can really happen and the last 20 years are proof of that. Whether it’s representing your country as an athlete, starring in a national television drama, or being elected to office, we know that disabled people can aim high and succeed.”

In 2014, disabled people’s lives are still tougher than they need to be

Nicholas Hamilton, racing driver:
“People love to tell you that you can’t do something when you have Cerebral Palsy, and I like proving them wrong. There were so many barriers to me becoming a racing driver and I’ve overcome them. I hope that in another 20 years’ time no one will ever be saying ‘you can’t do that’ and everyone will be encouraged to chase their dreams.”

Julie Fernandez:
“As a disabled adult, it is very hard to get a job, and very hard to access benefits. In fact, I would say that many disabled people in the UK still feel like second-class citizens. I am still shocked that for many people I meet, I am the first disabled person that they know. And often they start out with lots of negative stereotypes. I think that although we are definitely in a better position than we were twenty years ago, we are still fighting society’s attitudes towards us.

Bethy Woodward, Paralympic medalist:
“I think that young disabled people today are ambitious and want to succeed in life, in whatever they chose to do. You do need determination. Unfortunately, as a disabled person you do encounter negative attitudes. People underestimate what you can do, just because of your disability. ‘When I started out in athletics, it was very hard for me to join an athletics club. I eventually found a coach who showed some belief in me and encouraged me, and he has been a great support. Hopefully I have now shown what I am capable of!”

IanIan Macrae, editor, Disability Now:
“I’d say that as equality legislation has been eroded, and as the voices of disabled people in the media and as a movement have been made much quieter, fewer opportunities have been made available to fewer disabled people. In the 90s, we were seen as empowered and entitled to greater equality and more rights, and we were able to present ourselves as such… Now we’re defined in terms of having become more needy, vulnerable, and requiring support – through benefits, for instance – rather than needing more rights and greater equality.”

And some say that public attitudes are actually getting worse…

When we asked disabled people on Facebook how things have changed in the past 20 years, the majority of respondents said that attitudes have actually got worse.

“I actually think we’re going backwards. We were making so much progress, but since this government have been in power ignorance has reared its ugly head and now people are suffering as a result.”

“Socially nothing has changed in fact I think it’s worse. Because social opinion is influenced in many ways, I believe socially we are seen as a scourge better put down than supported. It’s frightening, an now our financial security is threatened too.”

“I rarely get offered a seat on the bus now, since the rise in the disabled = scrounger debate.”

“There’s been no change people still treat us disabled as second class citizens and this government doesn’t make things any better.”

Challenging attitudes to disability in 2014

Twenty years on from our name change, Scope is once again going to be tackling public attitudes to disability. We’d love to hear your views on what can be done to challenge attitudes to disabled people.

Mother knows best

Happy Mother’s Day! We asked mums from the Netbuddy community (now part of Scope) to pass on their top tips for making it work. Here’s what they had to say:

Mum hugging sonChoose your battles

I have learned the hard way to choose my battles carefully. I have to decide which battles really are important for me to win and which I can leave. The important ones involve safety and health. Some others you have to let slip for your own sanity!

Do a happiness audit

Think about what gives you happy feelings and do it as often as possible – whether it’s singing, dancing, laughing, sex or chocolate. Create a ‘Prescription for change’ for yourself, listing the things you need twice a day & twice a week. Then stick it on your fridge.

Be honest about your limits

Therapists mean well when they give you lots of exercises to do with your child, but sometimes, it’s impossible to keep up with them and still have time to do stuff like eat, sleep and breathe. Be open with the therapists if you feel overwhelmed, or need more ideas for exercises that can be an organic part of your day (say, bicycling a tot’s legs as you change her nappy).

Two mums talking with a cup of teaFace to face

Talking to other parents who are going through the same thing as you is always helpful. Face 2 Face is a one to one parent befriending service, run by Scope, for parents and family of disabled children.

Get plenty of exercise

Exercise is great for your overall mood. I’ve taken up weights, because my son is large and I worry that one day I won’t be able to manage him. Being fit has given me huge confidence in how I manage my son, which in turn has improved his behaviour.

Schedule time for yourself

Try to make a little quality time for yourself each day even if this means leaving the person you care for in front on their favourite DVD or TV program for half an hour. It won’t do them any harm! If you can, try and take half a day a week off – book a babysitter, book your child into a crèche/playscheme, play date, or family – give yourself that time to re-charge.

Mum looking tired

It’s ok to ask for help

Friends and family are often very happy to help, but don’t know unless you tell them. Draw up a list of suggestions you can use to ask friends and family for help, for example school runs, baking birthday cakes, mowing the lawn, helping siblings with homework, being on an emergency rota for overnight hospital stays.

Organize your home life

Buy two of non-perishable items like washing up liquid, so you always have one in reserve. Have a whiteboard in the kitchen to write on when things run out. Plan your meals for the week – even think about having Tuesday as curry night, Wednesday pasta, Friday fish, etc. to save time thinking. If you can afford to, get a cleaner.

Yoga for you

Take up Yoga to stop muscle injuries especially if you have to do lots of lifting and carrying.

Friends and hobbies

Friends and hobbies are enormously important because they take you out of your role as a carer for a short while. I try and mix with people who aren’t carers too, so I get to focus on something else for a bit.

Time out

I started running after the birth of my disabled daughter 8 years ago. It’s my time out – time for me to de-stress, clear my head & take out my frustration on the streets. I come back a happier & calmer person, ready to deal with the real world again. I think we all need time out for ourselves.

Family hugging and smilingA positive note

When you have a disabled child, filling in forms can be very depressing as you focus entirely on the negative. So I write on a separate sheet of paper one good point for every negative. I laminate this and put on the fridge so that when things are tough I can read it and remind myself of the fab things about my three disabled children.

Feel good!

Wear lipstick … always! In good colours – preferably expensive!
Toe nail painting is also very encouraging.

What are your top tips? Let us know in the comments below.

Read one of our fantastic posts from mums recently:

If we don’t look to the future the care crisis is only going to get worse

By 2020 there will be two million more people aged over 65.

Office for National Statistics projections suggest that the population aged over 80 will double by 2030; and, at the younger end of the spectrum, growing numbers of working age adults will be living with disability.

The ageing population, together with increased life expectancy and compressed morbidity more generally will combine to mean one thing: that the population in need of care is bound to expand.

From low level support to round the clock care, in the decades to come more and more citizens will find themselves needing assistance with basic human needs, or will be providing or funding care for others.

Photo of an elderly person's hands
Care Beyond 2020 –  (PDF)

On Monday 31 March Scope and the Future Foundation launch a new report looking at the future of care beyond 2020. It examines the forces that will drive changes in care over the next decade and the implications of these trends for charities, business, governments and citizens themselves.

It identifies many challenges – like how will we fund care for a much larger population of people with care needs? And how will our workplaces adapt to meet the needs of the growing number of employees balancing work with caring for family members at both ends of the age spectrum?

But alongside these difficult questions we also identify opportunities.

The author William Gibson famously said “The future is already here — it’s just not very evenly distributed”. Our report gives us glimpses of the future that exist today. Innovations that exist at the margins now can form the basis of new and better ways of meeting the diverse needs of future, more demanding, care consumers and their families.

For example:

  • Super smart homes and networked mobility aids will maximise the independence and wellbeing of disabled and older people in their own homes and beyond them.
  • Services that allow care users to self-monitor their health and wellbeing in real time, adjust medication or care regimes instantly, and where necessary alert care workers, GPs or family members, will increase people’s capacity to do more without continuous human support.
  • And the promise of Big Data means we can expect the onset of many health conditions like stroke or diabetes to become entirely predictable, allowing for targeted preventative interventions.
  • The growth in social media and smart phone usage, especially amongst older people, will allow care users to stay in touch with family and friends, and exercise their consumer power through online peer review communities that publicly rate the quality of care services.

These are just a few of technological and consumer trends explored in the report.

Our world is changing faster than ever. The challenge of funding care is a burning issue now in 2014, and it is right to focus on it. But, a look into the future tells us that the pressures of demographic change will only exacerbate these challenges unless we look ahead and act on what we see.

 

How have things changed for disabled people in the last 20 years?

This year marks 20 years since we changed our name to Scope.

As we look back at the last 20 years, how do you think things have changed for disabled people? Have things got better or worse?

Here’s what you’ve told us so far. Let us know what you think in the comments below.

“Better in many ways but the ignorance continues unfortunately and now backed by the government with it’s war on scroungers, we are people, we contribute towards society” – Bobbi

“I think things have got better in some ways but if you have a disabled people it is hard to get work.” – Jodie

“Things got better and now they’re going the other way. Very very sad times.” – Tina

Julie Fernandez sits next to a wheelchair
Julie Fernandez, actress, producer, campaigner
“When I meet and talk to young disabled people today… I can see that they have very different attitudes to say, twenty years ago.
We have legislation now to support the rights of disabled people both at home and at work. There are more accessible ramps, more disabled changing rooms in shops and lower reception desks in offices.
It is wonderful to see how much more confident young disabled people are today as they expect equality and rightly so.”

“Things have improved a little in my 50 years of CP but, not much. Still having to fight for everything, benefits, adaptions, equipment.”- Donna

“I’ve just adopted a beautiful 14 month little girl who has CP and even at this young age I’m shocked at the lack of facilities – doors too narrow, badly designed high chairs in all restaurants, no suitable play equipment in parks. If this is an improvement, god knows what it was like before.” – Lesley

Sascha Kindred holding a medal
Sascha Kindred, six-time Paralympic champion:
“I experienced quite a lot of name calling back in school, but I always had my twin brother there to support me so it seemed easier to deal with.
I definitely believe attitudes have changed since then as when I go back to schools now to speak about my experiences as a disabled athlete, the children are genuinely interested and I know a lot of other kids with disabilities have increased opportunities and facilities compared to my time at school.
I still think we need to educate people further though as this will continue to increase awareness of the challenges people with a disability face every day.”

“I think things are much better now, yes welfare reform has had an impact the past few years but overall I feel like the situation has improved markedly especially the last 3 years.” – Michael

“There’s more medical knowledge and laws have been passed to make public places accessible to all regardless of physical condition, so that’s positive.” – Tre

“Better than it was, but still got a long way to go.” – Karl

 

The doctor said ‘she won’t do anything normal children do’ #100days100stories

Micheala first shared her story with us in March 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories campaign.

Micheala was a 19-year-old city worker when she became pregnant unexpectedly with Venice. At 14 months Venice was diagnosed with cerebral palsy and the specialist told Micheala her daughter would never walk, run or dance. Now 13, Venice walks freely and loves to street-dance. In the lead up to Mother’s Day, Micheala talks about her and Venice’s journey.

Micheala and Venice together on a couch
Micheala and 13-year-old Venice

When Venice was born it was quite a tough time, I mean I was just 20. I was working for the stock exchange and I loved my job, I was earning lots of money, back then there were lots of bonuses.

Venice came early at 27 weeks, and she was in breech. She stayed in the incubator for three months. She had two blood transfusions and a little bit of jaundice, so she was under the lights for a while. Seeing Venice in the incubator was really tough. She was just so tiny.

Diagnosis

My cousin’s son has got cerebral palsy, and one day I came to my cousin’s house to collect Venice and he said, ‘Mick, I think you should get her checked out’. The day came when we had to have this meeting at the hospital, and her dad never made it – it was just me. This specialist said ‘I’ve looked at your daughter and she’s got spastic diplegia’. I said ‘what’s that?’ and he said ‘basically it’s called cerebral palsy and she won’t walk, ever, and she won’t dance, she won’t run, she won’t do anything that normal children do.’ I just cried and cried.

When V got diagnosed I had a choice to make, which was, be a city girl or be the mum that has to support this child. So I thought ‘that’s it now’ – I put work down and now it’s all about Venice.

First steps

She got her first splint at about two or three and she’d say ‘oh mum they’re hurting’ because they would rub her calf muscle. And she still wasn’t taking steps and I used to get a lot of questions at this time from other mums, like ‘ooo why can’t she walk?’

We went to a family wedding when Venice was about three. She was still in her buggy and we were having a family picture. She looked at all the other kids – they were running around – and she looked up at my mum and said ‘Nanna I just want to walk, I want to run’ and my mum just started crying and she said ‘you will Venice, you will’. And she did, she started walking at four, with the help of physio.

Leg operation

When Venice was about eight, her foot did something that we’d never seen before – it literally curled up. That’s when we made the big decision to have an operation – it was Venice’s decision also. That operation has got her to where she is today, being able to get around more freely.

They gave her about eight cuts to her left leg, a few cuts to her tendon, cuts to her calf, cuts to the bridge of her foot, cuts to the top of the foot, and the toe where it had just curled up, to correct the bone. After that there was six to eight week recovery, home with the Zimmer frame – literally a Zimmer frame – like what an elderly person would use – and a caste.

The doctor said to Venice ‘no pressure, you don’t have to go back to school, you can heal at home.’ And she said ‘no’ – she wanted to go back to school. Underneath that caste there were so many stitches – to think about it now, it turns my stomach. Any time the caste got bashed by accident, it was just tears.

Hopes for Venice’s future

Venice smiling
13-year-old Venice has cerebral palsy

I hope Venice continues to push herself and break the barriers, and not be ashamed, or feel uncomfortable. Probably the most valuable thing I want for her is to be independent and not be afraid. I’m sure I will worry if she comes home at 18 and says, ‘Mum everyone’s booking a girly holiday’. But I think the more independent she becomes, the most I’ll be able to let her do what she wants to do. But it’s still quite scary to think that I’ll have to let her go someday, just to be.

Scope’s helpline

Scope’s helpline provides information, advice and support on cerebral palsy and disability issues for disabled people, their families, carers and professionals.

Find out more about Scope’s 100 Days, 100 Stories campaign, and how to get involved.

This Mother’s Day is going to be tough

At three foot six and with brittle bone disease, raising a baby was always going to have its challenges. Last November Marie and her husband Dan became the proud parents of Mark, via a surrogate. As Mother’s Day approaches, guest-blogger Marie reflects that one of the hardest things is not having her own mum around.

Marie holding her baby
Marie with her baby Mark

This Mother’s Day is going to be tough. It will be really happy because it will be my first year of being a mum, but it will be difficult because my mum won’t be there. My mum died in October 2012, so this will only be my second Mother’s Day without her.

I think about my mum every single day. For some reason, when I am giving Mark his feed at about eight o’clock, I think about her the most. Mainly I think about how sad I am that she didn’t get to meet Mark and that she’s not here to experience what we’re experiencing.

Mark is growing every day, getting bigger every day. He’s doing more, like he started giggling in the last few weeks. It’s amazing, but there are two sides to it. At one end of the spectrum, I’m so happy because it’s our first baby, but at the other end, my mum’s not here to experience it.

I am glad that my mum knew what we were doing, that we were trying to have a baby. She was a bit worried at first about how we would cope physically, but when we explained that there would always be someone with me, she was fine.

She knew I just need a strong pair of arms to enable me to do things, because she was that strong pair of arms for so long. Now, my personal assistant and my husband Dan do the lifting for me: lifting Mark on to me, lifting him into his buggy, or lifting him from his cot. Once Mark is within my reach I can pretty much do most of the tasks for him on my own. But when something happens in life you naturally want to ring your mum and I can’t do that anymore.

It’s difficult, but now I just have to focus on being a mum to my little one and do what she used to do with me, with him. Sometimes when me and Dan bath him, if it’s a bit chilly, I put his clothes on the radiator to the warm them up and that’s something my mum used to do with me.

And if I’m ever feeling down, Mark is always there to pick me up. One of the best things is his smile. His eyes are so big and blue. As soon as I wake up in the morning I look over at him and he just smiles. And that just makes me happy all the time.

Marie is blogging about being a disabled mum for Scope, and has been raising awareness by talking to Sunday People

Jess the Goth Fairy

Guest post from Jo, who is creating a book with her daughter Jess.

Meet Jess

Jess holding a medal
Jess at the National Special Olympics last year

Jess is such a special person, I know I am her mum, but she has the ability to make people smile and just wants to help others. She has changed everyone’s life in the family for the better. Jess has learning and physical disabilities and I feel very humble to be her mum and have watched her cope with many situations over the years.

She is the inspiration for a lot of things in my life. I have always wanted to put pen to paper about Jess’s life and never known where to start. Rather than writing about the constant battles with the authorities (the never ending red tape, the moving goal posts), I thought that there must be a better way to tell people about this incredible young lady.

The Goth Fairy

Cartoon drawingWhilst I was looking at some of the cartoons that Jess had drawn, the idea came to me (one of my very few brain waves!) – a fairy.

Jess loved the idea. So we put our heads together and came up with “The Goth Fairy”.

Jess just wants to be treated the same as everybody else. She wanted to put across her feelings about what happens to her, such as being stared at or not being able to do things that most people can. We hope people who will read the book will realise that it OK to be disabled and it OK to be different.

Cartoon goth fairy
Jess the Goth

Jess the Goth Fairy has learning and physical disabilities, just like the real Jess. Wings that don’t work very well, so flying is scary and landing is a nightmare! She looks different, doesn’t do pink or wear dresses. Having a normal life as a fairy is very challenging for her.

Unfortunately we can’t create this book for free. The book needs illustrating, proofreading, copy-editing, marketing and much more, so we started a Kickstarter campaign to fund the estimated £6,000 we need. Thanks to some incredible support – we’re almost there!

Future plans

Jess would like to take the book into schools, colleges, and disabled organisations to read the book to anyone who would like to hear and talk to her about her life. I’m happy to support her but I hope somebody, such as her care provider, will also support Jess to do this on her own.

I know life will never be easy for Jess and things will probably get harder as she grows older. The thought that her dad and I won’t always be about to protect her fills me with fear. The last two years I have had ill health and been diagnosed with ME, and I have experienced in a very minor way, the prejudices that Jess goes through.

We hope the book will teach people about life with a disability. We want to show that though very hard at times, with the correct support, someone like Jess can achieve a lot and give so much to the community they live in!

Find out more about the book and the Kickstarter campaign.