All posts by Hayley Tomkinson

I'm in the Stories team at Scope.

People treated me differently when I became disabled

Hannah is a 26-year-old part time student and also enjoys fundraising when she is up to it. She became disabled at 14 and, in this blog, she talks about how her experiences changed when she started using a wheelchair.

I was healthy and fine until I was 14. Then I had an ankle injury and from that I developed complex regional pain syndrome. My mobility deteriorated. I went from walking with crutches to needing a wheelchair and about a year after my injury, I was totally bed-bound. I spent 4 years in hospital and 18 months in a neurological centre. I also have hyper-mobility syndrome, dystonia, arthritis in my hip, osteoporosis and a plated femur. I came home with a 24-hour nurse and carer. I still use a wheelchair and I have an accessible car which has been good. I have more independence again. I can get to specialists and do things in the community.

People’s attitudes changed when I became disabled

In June my old school was doing a TEDx conference and they asked me to tell my story. I spoke about raising money for Starlight Children’s Foundation because they granted my wish in 2013 to go on holiday – I wanted to help them to raise money to grant other children’s wishes. I also spoke about how people changed when I became disabled.

One of my closing comments was “Next time you speak to a disabled person, try to look beyond their disability, they are just like you”. I was basically talking about how people used to see me as ‘one of them’ but now, because I’m disabled, they see me differently. I’m still the same person. It’s just that my legs and a few other things don’t work.

Some people were unsure of how to act around me. I thought if I was walking in here you wouldn’t act differently, so why are you doing that now that I use a wheelchair? It’s strange to think that people treat me differently, just because I’ve gone from standing up to sitting in a wheelchair.

Hannah smiling in her wheelchair in front of her sofa at home
Hannah sitting in her living room

Some people speak to my mum instead of me

Often people do avoid talking to me. If I’m in a supermarket and ask someone “Can you tell me where this is?” they give the answer to my mum. I don’t understand that. If a non-wheelchair user asked a question, you wouldn’t give the answer to someone else.

Whilst I was with my mum at the checkout of the supermarket helping put the groceries into the bags, it came to paying. I retrieved my debit card out of my purse and put it in the machine. I requested cashback and then typed in my pin. I took my card out and awaited my cashback. Which the checkout assistant then gave to Mum with the receipt. I paid the bill and Mum got the cashback. I’m not sure how that works?

Once when I was out with my mum, someone asked her ‘Can she speak?’ – meaning me. My mum, a bit taken aback, quickly replied “Why don’t you ask her!” I think people are afraid of saying the wrong thing but saying something is better than saying nothing.

Hannah smiling in the garden holding her TED talks programme
Hannah in the garden

People treat me like I’m just a wheelchair

Once, at a craft exhibition, it was crowded so a lady just stepped across me and held on to my armrest just to support herself. She said “oh sorry” when she realised what she was doing and I thought “don’t say sorry – just don’t do it.” That happens quite a lot. At the same exhibition a lady put her shopping bags on my feet. Which was actually really painful. I’m not some sort of stand for you to put your bags on!

People often lean over you or stand in front of you, which they wouldn’t to anyone else. Some people even switch my wheelchair off and move my wheelchair too. That’s really annoying. I wouldn’t go and switch off your car.

I often get asked personal questions

We went to go see a house to see if it would be suitable for me and the Estate Agent said to me “So what do you think of the house?” then their next question was “So what’s wrong with you?” then “Will you ever walk again?” – I’d never met her before! That’s literally your first question to me?

It’s so damaging. It’s different if people volunteer the information or if you know someone really well. I get that they might be interested but it’s very personal information. Especially someone you’ve never met before. They can walk away and just carry on with their life with no extra thought about it and you are left feeling deflated, reminded of the reality you are living in.

You look well so you must be fine

There are times when people have said “Oh you look wonderful” and I’m like “Well we’ve been up since 7 am getting ready”. I like to look smart and presentable but sometimes it gives the wrong impression.

People say “You must be fine if you’ve managed to do all that.” It makes it harder for people to understand. But we shouldn’t have to change our lives to fit into someone’s idea of what a disabled person should look like.

Everyday equality

People should think of disabled people like any other human being. We’re the same, it’s just that we have extra difficulties to face in life. Talk to them like you would anyone else and don’t make assumptions about what they can and can’t do.

You can watch Hannah’s TED talk on YouTube.

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

My advice to anyone with a hidden impairment

Alex has worked for West Yorkshire Police since 2006, where she first joined as a Police Community Support Officer. She was diagnosed with Dyspraxia and Dyscalculia in 2014. Alex is involved with the Positive Role Model Programme, a West Yorkshire Police initiative to encourage more people to be open about disability. The message is “It’s okay to be you” and in this blog, Alex shares her story.

Before joining the Police I had lots of ideas of what I wanted to do as a career, but I never seemed to be able to focus on any one single pathway.  I struggled at school in all things academic, especially Maths, but nothing was ever flagged up.

Hidden impairments were not really known about in mainstream schooling. I think it was partially due to excelling in my social abilities. My reports always said ‘Alex is a cheerful, chatty person, a delight to have in class, very sociable’, coupled with ‘but she could try a little harder, she needs to concentrate more’.

When I was diagnosed a massive weight was lifted

When I was diagnosed in 2014 with Dyspraxia and Dyscalculia a massive weight was lifted. I am not stupid, I do not need to concentrate more. I am already concentrating much more than most people on the simplest of tasks. I also realised I had to stay away from anything to do with numbers if I wanted a stress free life.

I once had a job as an Assistant Manager of a high street shop. Most of the time I was good at it until it came to cashing up the tills at night – nightmare! It was so stressful and I assumed I must be really stupid to get things wrong time after time. Thankfully, my personality has always kept me going even if sometimes I feel I am going to crack. Now that I know I have Dyspraxia and Dyscalculia I can give myself a bit of a break from being ultra-hard on myself and ultra-critical of my mistakes.

Alex laughing, with a park in the background

Fighting to succeed

In a way, not being diagnosed earlier made me the person I am today who works hard to achieve everything I want at work and at home. I am driven, confident and sorely honest with myself. My conditions do not disable me but they do challenge me and I am up for a challenge in any form. It is this drive to succeed at everything I do that keeps me fighting to stay at work.

In my 11 years in the Police, I’ve had several roles and I am currently in a dream position at the Regional Scientific Support Service, training to become a Fingerprint Identification Officer. This is my biggest challenge to date and my Dyspraxia is really putting up a fight with the capabilities required for the position. But I have had this battle before and it hasn’t stopped me succeeding!

We need to think about reasonable adjustments

The assessment did get me thinking: why make a person with Dyscalculia (someone with no natural ability with numbers) do a Maths based test? Is that not setting them up to potentially fail? I fully acknowledge the need to assess people’s skills and resilience – especially in jobs like the Police – but I feel the current methods of assessment do not match our modern day understanding of disability. I think assessments could be more reasonably adjusted – impairments are much more complex than requiring a bit of extra time.

I think the recruitment process has moved forward with the introduction of a presentation as it’s another means of demonstrating a specific skill. These are much more relevant than demonstrating you can work out percentages.

Woman smiling inside an office

My advice for anyone with a hidden impairment

Some people feel like they want to hide the fact they have an impairment but I almost want to shout it from the rooftops. It validates me, my quirks and my frustrations. It means that people know to give me that little extra time and patience and afford me the right to get things wrong more often than is considered ‘normal’.

I would say to anyone with a hidden impairment: be open, be honest, be confident, be adaptable! Life is challenging enough without a hidden impairment and in coping with both you already have one up on the rest of them.

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

Read more experiences of having a hidden impairment.

I wish I could just ring up an insurance company and get a quote like everybody else!

Disabled people often struggle to access affordable insurance. Our research shows that 26 per cent of disabled adults feel they have been charged more for insurance or denied cover altogether because of their impairment or condition. Actress and disability campaigner Samantha Renke, who has brittle bones, shares her experiences.

Whenever I go abroad, travel insurance is always an issue. Given the nature of my impairment, and the high cost of wheelchairs, I wouldn’t dare go on holiday without it. Unfortunately, the lengthy process and the extortionate costs are something else.

Companies ask me the most intrusive questions

When I phone up to buy insurance, I have to go through a 30 to 40 minute interview. They’re not medical professionals at the end of the line but they probe into my health: Are you suicidal? Are you on medication? Have you had operations?

It’s such a lengthy process. You feel anxious. You feel interrogated. It really infuriates me because non-disabled people don’t have to disclose their mental state. Non-disabled people don’t have to disclose how much alcohol they’re going to consume. Why should disabled people be interrogated?

With brittle bones I get asked if I have scoliosis, a condition where the spine twists and curves to the side. My spine has been straightened and there is no issue, but this isn’t taken into consideration.

Black and white profile shot of Sam Renke smiling
Samantha is supporting our campaign for better access to insurance

My travel insurance is almost as much as my flights

Then the final quote I receive is through the roof. When I went to Mexico for two weeks the quote came out at nearly £500, which was nearly as much as my flights.

I’ve always been able to find a way to pay the extortionate cost for travel insurance, but I know a lot of people wouldn’t manage.  I wouldn’t go on holiday otherwise – I just wouldn’t risk it.

Ironically, I tend to be more vigilant on holiday

The irony is, with me having brittle bones, I’m not going to get on a jet ski! Disabled people on holiday are more likely to be hyper-vigilant because you’re not in your comfort zone.

I think attitudes towards seeing disabled people as ‘high risk’ needs to stop. Anyone can have accidents on holiday, anyone could die on holiday. What’s the justification for the high prices?

Hopefully things will change and disabled people will be able to ring up any old insurance company and get a quote like everybody else!

Join us in calling for better access to insurance for disabled people. Find out more about the campaign and how you can get involved.

We want to find out more about disabled people’s experiences of purchasing insurance. Please get in touch to share your story.

A challenge that reminds us what equality is really all about

Because of her particular impairments, cycling was not an activity Emma had ever considered, until her “super-sporty” colleague and friend Paula proposed that they should ride together in their firm’s annual networking cycling event. In this blog they talk about preparing for the event and their experiences of the day.

Do you fancy coming on a bike ride – I’ll pedal!?

Paula: I enjoy being active.   I am curious to test my limits. I am not a great athlete by any stretch of the imagination – far from it. I do however wholeheartedly buy into the mind-set that anything is possible with committed training.  Over the years, I have cycled London 2 Paris in 24 hours, completed multiple Ironman Triathlons and taken part in Race Around Ireland.

The other great love of my life is friendship. I cherish my friends.  I find their company restorative, life-affirming and joyful.  Emma is my friend and my colleague. When this year’s Leigh Day (the law firm I work for) cycle ride was announced I saw an opportunity to invite my colleague Emma into what I assumed was an unexplored part of the world for her – and because I enjoy cycling so much I just assumed she would too!

I  searched the internet for adapted bikes and was heartened to see so many different varieties. It was clear to me that the means were available – all I had to do next was check whether the appetite was there. Interestingly this presented me with the most significant challenge: how to ask Emma if she fancied joining me on the ride. It sounds so daft now to read that but it is true. I had no idea if my idea would be well received, or come across as insensitive, neither  did I know if  my research into adapted bikes would be seen as patronising. The last thing I wanted to do was cause offence.

Emma wrote an excellent blog about disability and awkward conversations.  So reassured with what I knew Emma thought about starting the conversation, I decided to park my discomfort and simply asked “Do you fancy coming on a bike ride – I will pedal!?”

Paula and Emma on the bike from behind, with other cyclists on the route
Paula and Emma on a trike with cyclists on the road around them

Overcoming challenges

Emma: It actually took a while for me to take the idea seriously! The first challenge was practical – how to find a suitable bike. Leigh Day put us in touch with Wheels for Wellbeing, a fantastic charity which works to remove barriers to cycling for disabled people. On our visit to try out the bikes, the link between wheels and wellbeing was very apparent on the faces of the people riding around the hall. There were people with a variety of imapirments and on a variety of bikes. We opted for a side-by-side tricycle (think Two Fat Ladies, but without the motor). For me this had the advantage of proper seats, so no saddle to feel precarious on, and a design that allowed for only one person to pedal.

The second hurdle – increasingly challenging as the day approached – was to sit with my fear of the ride and not chicken out. A corollary of being disabled is that you have to consciously build whatever measure of independence you can achieve, constructing your comfort zone almost brick by brick. So the prospect of abandoning the freedom and safety of (in this case) my car to effectively get on someone else’s bike was daunting. This mostly manifested itself as fear of accident and catastrophic injury, not because I had any doubts about Paula’s skill as a cyclist (she recently cycle-raced round the entire coast of Ireland!) but because we would be at the mercy of other road users without any protective shell. And more fundamentally, as a passenger, I would not be in control.

Paula and Emma mid race on their adapted bike
Paula and Emma mid race on their adapted trike

I look back on it as a day like no other

The day of the ride was blessed by sunny skies and a refreshing breeze. We were joined by our friend and fellow employment lawyer Tom Brown, who took turns with Paula on the 55kg trike. As the rest of the cyclists took off on their longer routes, we turned off onto our tailor-made route, only to discover later that we had done the whole thing backwards. The beauty of the Warwickshire landscape was a revelation, as was the universally kind reaction of all the people we encountered during the ride including all the drivers that got stuck behind us (this has made me reflect on my own habitual impatience behind the wheel!).

Now, after the event and still in one piece, I look back on it as a day like no other – a day of adventure, laughter, camaraderie and experiencing the countryside in a new way (in a car you are never really ‘in’ nature). Most of all, it gave me a new sense of what real inclusion means. Because for me, the best thing about the day was that despite the lengths to which all the people involved had to go to make it possible – from sourcing the bike, planning our route, exerting unfamiliar muscle-groups, heaving the bike over turnstiles and foregoing participation in the main ride – I never felt that they were doing it to be nice to me. While my physical limitations framed the practicalities of the day, my disability didn’t feel anything more than incidental; I was encouraged and facilitated to join the event not as a disabled person but as Emma, and for me that is priceless.

As we return to our day job of representing people facing discrimination and other forms of mistreatment, we both feel that we will often return to the experience of that ride as a kind of touchstone of what equality is really all about.

Take a look at other accessible events like the Superhero triathlon and Parallel London.

Or you can tell us your story.

Why businesses need to think about disabled consumers

Will Pike is a games developer from London whose parody of Channel 4’s Superhumans advert went viral last year. Tens of thousands of people have signed his petition for better access. In this blog, he talks about how this affects disabled consumers, and what needs to change in media representation.

Back in September 2016, I made a short film to highlight the poor disabled access found up and down our high streets. As a wheelchair user, I wanted to demonstrate how frustrating these obstructions are from my everyday perspective. I also wanted to demonstrate that establishments are missing out. By not being accessible, they’re losing multiple paying customers. Regardless of the fact that I can’t walk or overcome a set of stairs without assistance, I still have money in pocket to spend.

The ‘Purple Pound’ is worth in the region of £240 billion. This spending power is exactly why society should be a more opportune place for everyone. Why are so many businesses unable to recognise this?

We need to see more disabled people in mainstream media

Whilst accessibility is fundamental, it’s no good just making a bunch of logistical improvements if attitudes to disability don’t change. I’m not simply talking about seeing disabled people as an untapped purple cash-cow. I want society to see the purple person behind the purple pound. It’s so important that disabled people are given a more prominent place in mainstream media, where they can contribute to reversing poor public perception and ignorance.

Will in his wheelchair outside a restaurant where there's a step
Man in a wheelchair unable to access a restaurant

Fundamentally, this is the reason why diversity is so important. If we only have a monosyllabic representation of society displayed upon our TV screens, then we’ll continue to limit the prospects of anybody who doesn’t conform to a notion of the perceived norm. We must challenge this. It obviously goes beyond disability to include race, sex, gender identity, sexual orientation and age. It also means evolving our perceptions of beauty and happiness. For instance, in the film ‘Me Before You’, the main character is a quadriplegic chap called Will, who ultimately concedes that life with a disability, even with love and financial stability, is so miserable that he must end it all. What kind of message does this send out to the world? For those with a disability it’s insulting and heartless. While for those without a disability it simply reaffirms the (misplaced) need for pity.

Change is happening, but we need more

But it’s not all doom and gloom. Change is happening, but society needs to do more than the bare minimum. We need to see more disabled people on telly, while ensuring that the inclusion of disability isn’t a token gesture toward equality. There also needs to be a comprehensive strategy to improve the quality of life for all disabled people, positioning us as simply part of the normal spectrum of human experience. Only then will society truly benefit from the Purple Pound.

At present only 2.5% of all characters on TV screens are disabled. It’s hardly surprising then that 81% of the 13 million disabled people in the UK do not feel they are well-represented on TV and in the media. This has to change. It’s time for businesses to recognise the value of the purple pound and put more disabled people at the heart of their campaigns.

Will supports Scope with our mission to drive everyday equality, so that disabled people have the same opportunities as everyone else. Visit our website to find out more about our work and how you can support us.

Read more blogs on the power of disabled consumers.

“We all want to be a part of society don’t we?” Addressing loneliness in disabled people

Yesterday we attended the launch of Sense’s report for the Jo Cox Commission on Loneliness. Their research found that over half of disabled people (53 per cent) say they feel lonely, which rises to 77 per cent for young disabled people. In this blog Scope storyteller and autism advocate, Carly Jones, shares her experiences and ideas for change.

I was really honoured to be invited by Scope to come to this event. As Jo Cox so eloquently put it when she was alive, you think of loneliness and you think of older people, we don’t think of children and young adults. But I know from my personal experience, and the autistic community as a whole, that we are extremely isolated.

My experiences of loneliness

I didn’t get my autism diagnosis until I was 32. You can read more about it in my last blog for Scope. I remember feeling very different at school. I was really anxious. I started realising that I never got invited to birthday parties. I was pretty aware by the time I was in my late 20s that I was autistic, but without a diagnosis it was like being in “no man’s land”.

When I finally got my diagnosis, I filmed it with the help of the National Autistic Society so that no-one else would have to go through this alone, because I felt so alone.

Getting my diagnosis changed things for the better because I could start going to autistic events without feeling like a fraud.  My advocacy work has really helped me find people who understand disability or other autistic people who just get it because they’re autistic too, and you can become friends. So my advocacy work has actually been my social life line. People say “Oh you’re so selfless” and I’m like “No, doing this helps me get out of the house and meet people too!”

Carly smiling with Mel and Juliet from Scope
Carly Jones with Scope staff

Three ideas to address loneliness in disabled people

Better representation in the media: If there’s an autistic person on TV usually it’s a boy who’s about 8-years-old and into trains! It’s really not helping. It’s isolating the thousands of autistic women and girls in the UK who are struggling to have their needs met in everyday society. We need a autistic girl in a big show like Eastenders, who has challenges but strong and sassy.

The education system needs to improve:  Schools need to be more holistic in their approach to difference and really nurture talent. You get awards for being good at maths but what about the artists, the philosophers, the big thinkers, the social entrepreneurs?

I had a really difficult time at school because I struggled with the environment, but teachers just thought I was being naughty. When your needs are not being met it can lead to mental health problems and vulnerability. A lot of the children who come to the events are home educated because they’re not “autistic enough” for a Special Educational Needs (SEN) school but they can’t get the support they need in mainstream school. That can be incredibly isolating too.

More social opportunities: I run a bi-weekly group for young autistic people.  The stereotype is that we never get invited to things so, with the events that I put on, we go to some really cool places and they can invite whoever they like – autistic, disabled, non-disabled. Hopefully their friends will then grow up not seeing autism as this stigmatised thing but thinking “I had an autistic friend in school and we did some really cool things”.

Adults need better groups too. Sometimes you’ll see events for autistic adults and it’s just basically what you would have for a child but for an older audience. You know, we are cool, quite cool and we are adults in our own right and we are responsible people. I think if there were more clubs – which are affordable – there would be more opportunities to meet people.

woman standing in front of a poster holding a magazine
Carly Jones, Autism Advocate

We all want to be a part of society don’t we?

It was fantastic to be at this event. I’ve already got so many emails in my mind that I want to send! Everybody genuinely wanted to hear other people’s stories. The fact that it’s cross party, cross charity, working together, is really fantastic. We all want to be a part of society don’t we? As someone said, it’s not a 10 year solution, it’s more like 40 year solution, but I’m hopeful that we’ll get there.

From 10 July to 13 August, Sense will be leading a coalition of disability organisations, including Scope, to shine a spotlight on the issue of loneliness for disabled people and the steps that we can all take to help tackle it. Head to the website to find out how you can get involved.

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

Why the fashion industry needs to include disabled people

Meghan is studying fashion at the University of South Wales. For her end of year show she designed a sportswear line which is specifically adapted for different impairments. In this blog she talks about the reasons behind it and her hopes for the future.

At school I was good at Product Design and Art, so I knew I wanted to go into a form of design. I wouldn’t really say I was a big fashion person in the typical sense which is why I wanted to do sportswear – it’s design for a purpose.

Discovering a gap in the market

I’m in my third year now and I have to do a final collection. I started looking into adapted clothing and I discovered a massive gap in the market. A lot of the people I spoke to said that the clothing that is out there is quite unfashionable or really expensive. There’s not enough choice for them in mainstream fashion.

I feel like the fashion industry does forget disabled people. When it comes to adaptive clothing, there are maternity sections in shops but disability is almost completely forgotten about. All the clothing is just t-shirts and trousers, there’s nothing stylish, which is what they want.

 

Molly posing on the catwalk

In some ways it sends a negative message to disabled people regarding sports and they might not feel confident enough taking part in sports or going to the gym, especially if they are wearing something they aren’t comfortable in themselves. But I think there has been a change in attitudes more recently because I have been seeing more representation, but I also don’t know if that’s because I’m involved in it, so I’m noticing it more.

Accessibility can be an issue too. The girl who I have as my visually impaired model, she’s got her own business helping websites and apps make their stuff more accessible for disabled people.

Kyron posing on the catwalk

Developing my sportswear line

After talking to various people, I decided to design pieces to suit four different impairments: visual impairments, dwarfism, amputees and down’s syndrome. I got in contact with a charity called “Follow your Dreams” which is for people with down’s syndrome and learning difficulties. I went to a few focus groups with them to meet people who have down’s syndrome and to get information about what they would want out of clothing and sportswear. I also spoke to Disability Sport Wales.

The Fashion Show

For the show, I had four outfits shown and I used the same models that I’ve worked with on my photo-shoots. I’ve got Tony, who is a world champion athlete, Kyron who is a Paralympian. Molly, who has ushers syndrome and runs her own company – Molly Watts Ltd – and finally, Emily who has down’s syndrome. The show was on 26 May and was a great success.

I really wanted to have all disabled models because otherwise it would completely take away the impact. I just hope that I raise more awareness from it and show people what’s possible.

If you have an experience you’d like to share, get in touch with the Stories team.

Photos by Michaela Harcegova.

Employing disabled people isn’t just about building ramps

Abbi was born with a genetic bone disease called osteogenesis imperfecta, also known as ‘OI’ or brittle bones. In this blog, she talks about some of her own experiences and what she thinks needs to be done to support disabled people in and out of work.

I was very lucky to get a job straight out of university. I work in a large advertising agency in London which can afford things like a wheelchair accessible office, ergonomic furniture and any software I might need. My physical access to my office is faultless, but employing disabled people isn’t just about building ramps.

Having the confidence to ask for what you need

When I started my job, I was never given the opportunity to explain what my impairments are and what effect they have on my life. As a junior employee, I didn’t feel comfortable asking for that conversation.

After a year of working 10 to 12 hours a day, five days a week, when I could no longer disguise my illnesses my employer didn’t know how to respond. I ended up having to take an entire month off work for reasons which could have been avoided had I felt comfortable explaining my conditions, and asking for a little flexibility, earlier on.

My agency is now working to make changes to my role but it’s been a real knock to my confidence in the workplace and has had a real effect on my mental health.

In my experience, many disabled people at the moment have a real fear of appearing as a financial burden to employers. That’s wrong, but it’s a position with which I can only empathise.

Abbi, a young disabled woman in a wheelchair, smiles and poses for a photograph

Everyday Equality by 2022

We live in an increasingly technological world, yet many employers consider employment to mean being physically present in a place of work, nine to five, five days a week. That’s something that for many disabled people is simply not possible. It’s something that I’m not going to be able to maintain forever and it’s not necessary to do a good job.

The key is flexibility. We need to create a culture in which disabled people feel confident asking employers and potential employers for what extra flexibility they need to do a good job. Whether that’s working four days a week, reduced hours, working from home or just taking a lie down once a day, a little flexibility can make all the difference for disabled people, especially those with fluctuating conditions.

Tell us what would help to improve your work opportunities

Scope is calling on the next government to improve disabled people’s work opportunities.

You can read more about Scope’s priorities for the next government and how you can register to vote in this election.

What would help to improve your work opportunities? Email the stories team and tell us your experience – stories@scope.org.uk 

You can also join the conversation on social media by using the hashtag #EverydayEquality.

I still don’t have the support I need to live a full life

Josie, from Bristol, was a nurse until 2008, when she developed a number of impairments which affect her health and mobility.

She has most recently been diagnosed with mast cell activation, a condition which affects immunity and increases the chances of anaphylaxis attacks.

In 2008, I was well and working as a nurse. Then I got ill, and just didn’t get better. I was eventually diagnosed with fibromyalgia, a neurological condition which causes pain all over the body.

I then suddenly developed idiopathic anaphylaxis – life-threatening allergic reactions caused by a range of things, from heat to pollen and perfume. It means I need to have a support worker with me when I go somewhere new in case I have a reaction.

My other health problems mean my mobility is limited, and I’m often ill in bed for several days at a time.

I recently got an electric wheelchair, which has been amazing and has given me some of my freedom back. I have two children who live with their dad, whom I see regularly. But I still do not have the support I need to live a full life.

Some days I barely get to speak to anyone

At the moment, I get three short visits a day from a care worker to cook my meals, help me shower, and keep the house clean. I get two hours every two weeks “social” time which at best on a good day gets me over the park and back .

It’s not long enough to join in any activities but I value this time hugely as it’s uninterrupted time with actual real conversation, not just “what do you need to eat?” or similar.

My basic needs are met – I’m clean and I’m fed. But I haven’t got enough support to actually get me out of the house. It means that some days I barely get to speak to anyone, let alone have a social life.

If I get an infection and have to ask my carer to pick up a prescription, I don’t get to have a shower that day. There just isn’t enough time.

Josie, a disabled woman, and her daughter

What the right support would enable me to do

A little more support – for example, a support worker to go with me to new places – would give me so much more opportunity to take part in life, but at the moment that feels like an impossible utopia!

People like me, who were professionals and could make a contribution with the right support, are being cut out of the workforce.

Working in an office or a hospital isn’t really possible for me, but I still have skills and experience that I would like to use, if I had the means of doing so.

Everyday equality by 2022

In the end, it is a question of equality. In a fair world, I would have the support I need to live my life, and the opportunity to fulfil my capabilities.

I’d be able to go out and have a social life. I’d have support to do some work, maybe based at home where I would be able to control my surroundings. Instead I don’t feel like I’m living, just existing.

Tell us what living independently means to you  

Scope is calling on the next government to improve social care for disabled people, so they can live the life they choose.

You can read more about Scope’s priorities for the next government and how you can register to vote in this election.

What does living independently mean to you? What would getting the right support from social care enable you to do? Email the stories team and tell us your experience – stories@scope.org.uk

You can also join the conversation on social media by using the hashtag #EverydayEquality.

Paying extra to live my life

Jean has Ehlers-Danlos syndrome which means her joints dislocate easily and she is in a lot of pain. In this blog she talks about her experience of extra costs and shares her hopes for the next government to bring about everyday equality for disabled people by 2022.

I came home from work one day, fell over, was taken to hospital because I couldn’t get back up. I came out of hospital a week later in a wheelchair. I was diagnosed with Ehlers-Danlos syndrome several years ago. Since then I’ve been trying to get on and live my life, but I face a huge range of extra costs which makes things harder than they should be.

The things I need to live my life

Many of them aren’t obvious. Things like adapted cutlery and kitchen equipment are vastly more expensive than an ordinary set. I’m supposed to have specialist knives to help me with preparing veg and things like that – with the handle at a 45 degree angle – but they are about £15 a blade. They are not covered by the NHS, you have to pay for them yourself, and we can’t afford them.

I’m a careful budgeter, tracking what I spend down to the penny, but I can’t scrimp on the things I needs or it can take a big toll. I have to eat a particular diet because my condition affects my gastric system, and if I am not very careful with what I eat then my gastric system will start going downhill. Our shopping bill comes to about £120 a week.

We had a situation a couple of years ago where we were living on essentially £50 a week, so we were buying the really, really cheap basic stuff. We managed to make sure we had enough to fill us but I was really ill. I was bed-bound for a year because I was having so many problems with my stomach and lower back and with pain in my hips and my pelvis. I couldn’t move.

I have all kinds of other costs. Some are really big. For example, I get a basic wheelchair provided for me, but I really need an ergonomic one to reduce stress on my joints, which is very expensive. You expect that any equipment you need you’d get from the NHS (you get for free), but you only get the very basics. It’s around £1,200 to £1,500 to get a wheelchair that suits my needs, and we couldn’t afford that.

Jean sitting at a desk with an open laptop in front of her
Jean struggles to pay for essential equipment that she needs to live

Everyday equality by 2022

People think that because you are disabled you shouldn’t be allowed to have a normal life – to do the same things that they do. I’m just trying to have a normal life.

My future vision for disability equality would be that all buildings and public spaces are built with disability in mind from the outset. Anyone can use accessible facilities but disabled people cannot use all facilities.

I would also like attitudes to change so that disability was seen in the same way as race, sex or gender – just an everyday difference rather than an inconvenience that has to be managed by companies, corporations and institutions.

I want disabled people to be involved (not represented but representing themselves) at all levels of responsibility. The old adage of “nothing about us without us” still isn’t utilised enough in my opinion.

Tell us what being financially secure means to you

Scope is calling on the next government to improve disabled people’s financial security.

You can read more about our priorities for the next government and how you can register to vote in this election.

What does being financially secure mean to you? Email the stories team at Scope and tell us your experience – stories@scope.org.uk

You can also join the conversation on social media by using the hashtag #EverydayEquality