How to employ your own Personal Assistant (PA)

We’ve produced a new video featuring  five top tips for employing a Personal Assistant.

1) Decide what support you need to live the life you want

Make sure you have a think about the number of hours of support that you need. You also need to decide whether you need to recruit more than one PA to support you. It’s a good idea to have more than one person, in case one PA is off sick or on holiday.

2) Think about how you will find the right person

You can advertise in loads of different ways. You could try the internet and Facebook groups. Do remember to keep yourself safe and carry out any interviews in a public place. Some local support organisations may be able to help you with this. Just remember, it might take some time to find the right person for you.

3) It needs to be a business relationship

It might seem like a great idea to hire your friend but remember that they will be your employee. You need to make sure they have the skills and qualifications necessary to do what you need them to. Remember, it’s important to ask for references and to do criminal record checks for your PA.

4) Think about the responsibilities that come with hiring a personal assistant

This can include managing direct payments and lots of other administration.

5) Remember you might be able to get help to become an employer

In some areas, it’s possible to outsource things like payroll and get extra help to become an employer. Your local authority should be able to advise you on what local support and information is available.

If you’re considering employing your own personal assistant, read PA tips from members of our online community. 

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.

How can the next government ensure disabled people have the support to live independently?

We want the next government to deliver Everyday Equality with disabled people. It must put the interests of disabled people at the heart of its agenda, and deliver meaningful change over the next five years to tackle the barriers that prevent disabled people from participating fully in society.

A key part of Everyday Equality is having the right support to live the life of your own choosing. However, there are still a range of barriers that make this difficult for disabled people, from inadequate social care provision, to inaccessible physical environments and digital exclusion.

That’s why we are calling on the next government to ensure disabled people have the support to live independently.

Increasing investment in social care

Social care is an essential public service that supports disabled people to get up, get dressed and get out of the house.

Around a third of social care users in England are working-age disabled people. However, we know that more than half are not receiving the right care to support them to live independently.

Text says, Over half of disabled people using social care can't get the support they need to live independently

This means not enough disabled care users are getting the support they need to live independently, work, volunteer, and live full, meaningful lives.

In order to ensure disabled people are getting the right level of support, it is crucial that the issue of inadequate funding in social care is addressed. Whilst we have seen some recent investment, the funding gap in our social care system is estimated to rise to £2.8 billion by 2020.

That’s why we are calling on the next government to increase investment in social care so that disabled people of all ages are able to access the support they need to live independent lives.

Improving access to everyday services  

Living independently means being to have choice and control over your life, whether as a consumer, whilst travelling, or whilst socialising.

However, we know that disabled people often face barriers in accessing day-to-day markets, services and amenities.

For instance, less than a quarter of disabled people think the accessibility of pubs, restaurants, clubs and shops has improved since 2012. In the digital world, 25 per cent of disabled adults have never used the internet compared to 6 per cent of non-disabled adults, often due to a lack of digital skills or inaccessible websites. This means disabled people are more likely to miss out on the best deals and offers which are commonly found online.

We want the next government to ensure equal access to goods and services for disabled people by increasing compliance with the Equality Act, and tackling the digital divide between disabled people and non-disabled people.

Tell us what living independently means to you  

You can read more about our 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

How can the next government improve disabled people’s financial security?

We want the next government to deliver Everyday Equality with disabled people. It must put the interests of disabled people at the heart of its agenda and deliver meaningful change over the next five years to tackle the barriers that prevent disabled people from participating fully in society.

A major barrier to achieving everyday equality is the additional costs disabled people face as a result of their impairment or condition.

That’s why we are calling on the next government to improve disabled people’s financial security.

Life is more expensive if you are disabled

On average, disabled people spend £550 a month on costs related to their impairment or condition. These costs may include expensive items of specialised equipment, higher heating bills, or more costly insurance premiums.

Infographic reads: Life costs more if you're disabled. On average, disabled people spend £550 a month on disability related costs

These costs have a detrimental impact on disabled people’s financial stability. For instance, disabled people have an average of £108,000 fewer savings and assets than non-disabled people, whilst households with a disabled person are more likely to have unsecured debt compared to households without a disabled member.

The financial barrier of extra costs makes it harder for individuals to get into work, access education and training opportunities, and participate fully in their community.

It is vital that the next government tackles the financial penalty experienced by disabled people.

Ensuring disabled people have adequate support to meet extra costs

Personal Independence Payment (PIP) – the successor to Disability Living Allowance (DLA) – plays a key role in helping disabled people meet some of the additional costs of disability.

However, we know that applying for PIP is often a stressful process for disabled people. Our helpline saw a 542 per cent rise in PIP-related calls in the period April 2016 to March 2017 compared to the year previously, many of which were concerning difficulties disabled people and their families were experiencing with the assessment.

The assessment for PIP looks at how a person’s impairment or condition impacts upon their ability to carry out a series of day-to-day activities. We are concerned that this does not always capture the full range of additional costs that disabled people face. This can be seen by the fact that two thirds of individuals are successful when they appeal a decision following their PIP assessment.

That’s why we’re calling for the next government to protect the value of PIP and develop a new assessment for the payment that accurately identifies the range and level of disabled people’s extra costs.

We also know that life is particularly difficult for families where both adults and children face disability related costs.

As such, we want to see PIP and DLA act as a passport to other benefits for families with disabled children, such as free school meals and support with health costs.

Driving down extra costs

Action is also needed to drive down the extra costs that disabled people face in the first place.

Households with a disabled person spend £249 billion a year, the so-called “purple pound”. Yet, disabled people are too often unable to access essential goods and services at an affordable price, making it difficult to capitalise on this spending power.

Many disabled people also encounter poor customer service from businesses, with three quarters having left a shop or business because of a lack of disability awareness.

Two particular sectors where disabled people tell us they struggle as consumers are energy and insurance. For instance, Scope research shows that 29 per cent of disabled people have struggled to pay their energy bills in the past year. In the insurance market, two and a half million disabled people feel they have been overcharged for insurance because of their impairment or condition.

We want the next government to make sure essential markets, such as energy and insurance, have adequate services and support in place to help tackle the problem of additional costs and empower disabled people as consumers.

Tell us what being financially secure means to you

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.

How mindfulness helped me become more resilient

Milo is Scope’s Film and Media officer and has seen first hand the massive benefits practicing mindfulness can have. In this blog he looks at his own childhood struggles and how he thinks practising mindfulness may have helped him growing up. 

As a child my mind was a noisy place.

Sometimes I was treated badly by other kids because I would cry a lot of the time or would behave in ways they saw as strange. I just never seemed to develop that thick skin or the ability to fit in.

At secondary school I made a conscious decision (in hindsight a very bad decision) to put my sensitivity to rest. I started playing the part of the ‘confident cool kid’. It came as a total shock to me that people believed this facade at first, but they did!

A young boy smiling with the Disney character
A young Milo visits Disneyland Paris

I built up an external identity, patched together out of all the things I wanted to be and all the things I thought other people liked. I thought I was a pretty cool teenager. Fast forward eight years however, and cracks started to appear in this makeshift armor.

As it turned out the eureka solution of my adolescence wasn’t a suit of armor, it was a cage. University and immense social pressure exposed this. I tried various things to remedy my feelings of isolation and anxiety to no avail, and experienced several years in a dark place. It wasn’t until a particularly dark patch that I was given a book on mindfulness.

Building my resilience with mindfulness

It’s is not about doing yoga, going vegan or becoming ‘enlightened’. In fact, it couldn’t be more simple. Anyone can do it, anywhere, anytime – it’s just about directing your whole attention to the present moment.

Focusing on the ‘here and now’ can be an amazingly effective way of combating stress and anxiety. In these agitated states the brain tends to run away with itself, obsessing over the past or worrying about the future. When we devote ourselves to the present, whether it’s eating a tasty meal, feeling the way our limbs move or just sitting and listening to all the sounds around us, we give our brain a break and unload a little bit of stress each time.

It’s a cumulative process and the longer you practise mindfulness, even just a few minutes a day, the stronger your resilience and your ability to navigate stressful situations that might have overwhelmed you before. Don’t get me wrong, stress and anxiety aren’t a huge issue in moderation. Most of us however will experience far more stress than is useful because of the pressures of our lives. Mindfulness won’t teach you to never feel stress, but, by being present moment to moment, we can start to recognize and then unlearn our negative thought patterns.

Me today

Though I’ve now developed ways to increase my resilience, life is still sometimes a struggle. However committed I am to engaging mindfully with the world, I still swim against old habits. But, the regular practise of mindfulness, my safety net, means I have richer relationships with the people around me and I have never felt stronger and more true to who I am.

Knowing the progress I have made within just a few years, I can only begin to imagine how much greater these benefits would be if they had been part of my early education. The younger you are the fewer bad habits you have, to ‘unlearn’, the more wholeheartedly you can embrace mindfulness and the lighter the burden of life.  I know that if I’d started practising mindfulness as a child my resilience would have deep foundations and my self-belief would be indestructible. Instead I’m a bit like someone who learnt to swim as an adult. Sure I can stay afloat, but I’ll never be a mermaid.

Mindful Monsters

So resilience, I’ve worked out, is pretty important. Scope have years of experience supporting disabled people and their families build resilience in their lives. Whether as a parent, at the point of their disabled child’s diagnosis, or as a young disabled person, having the right tools to gain independence. Scope think it’s so important in fact, that resilience is a headline in their new five year strategy.

And that’s why Scope have launched Mindful Monsters, which is a fun, new way for all parents to develop resilience and kindness in their children, whilst supporting disabled people and their families through a monthly donation.

Families receive a set of activity cards to their door each month, giving their children important life skills, while spending quality time together. There are four themes to explore: relaxation, creativity, positivity and concentration. Fun, quick, easy, and as Mindful Monsters is inspired by mindfulness, the activities come with all its brilliant benefits.

I’m really excited about Scope’s Mindful Monsters and how it can help children build resilience into their lives, it’s exactly what a younger me needed!

Find out more at mindfulmonsters.co.uk.

We want to show disability discrimination the red card

We’re teaming up with Virgin Media to highlight disability discrimination in football grounds.

New research shows that disabled football fans feel excluded from live games. Eight in ten people who attend football stadiums across the UK say they have experienced some form of discrimination such as abusive language and negative attitudes from other fans and other issues resulting from their disability.

As a result, the majority 62% of disabled fans said these experiences had stopped them from going to a live match again.Text reads: 62% of disabled fans that have experienced discrimination said it stopped them from going to a match again"

To highlight the issue and put disabled fans at the heart of the game, Virgin Media is donating its shirt sponsorship of Southampton FC to Scope for the Saints home match against Manchester United FC next Wednesday (17 May).

This special one-off activity forms part of Virgin Media’s partnership with Scope to help transform the lives of disabled people, and to date, the company has donated £1 million to Scope.

Together with Virgin Media, we’re calling on fans and clubs and governing bodies to help improve the experiences of disabled fans at grounds across the UK and deliver everyday equality for disabled people.

Football is our national game and should bring people together. We know that large numbers of fans want everyday equality and that means an inclusive game where discrimination of any kind isn’t tolerated. Disabled fans shouldn’t feel forced out of the stadium.

Side-lined in the stands

The survey reveals disabled football fans feel unwelcome in the terraces because of the reception they receive from some non-disabled fans.

The findings show that nearly 40% of disabled supporters who go to matches say they have experienced negative attitudes from other fans and 29% said they had been victim of verbal abuse.

Almost two-thirds (62%) of disabled football fans think the football industry needs to do more to prevent abuse and discrimination towards disabled people.Text reads: "62% of disabled fans think that the football industry needs to do more to prevent abuse and discrimination towards disabled people"

This is also backed by a separate poll of non-disabled fans who go to matches, where more than half (52%) think more should be done to prevent discrimination towards disabled people at football matches.

Disabled fans want a better experience

The poll has also found that football clubs could do more to improve the experiences disabled fans have at live games.

Less than half of disabled fans (43%) said their club had staff who are well trained in disabled fans’ needs, while only 42% said their club had a zero-tolerance statement on abuse for example, which may cover the use of negative language. More than a third (38%) of disabled fans who go to matches said a lack of appropriate facilities at other stadiums stop them from going to an away game.

More than half of non-disabled football fans think more should be done to make clubs more accessible for disabled fans.

Gold medal hero backs campaign

The shirt-swap is being backed by Paralympic gold medallist and avid football fan, Richard Whitehead MBE.

Richard will help coach five Southampton supporters for a penalty shoot-out during half time at the match to raise up to £25,000 for Scope. Virgin Media will donate £5,000 to Scope for every goal scored. The penalty takers will have to score past formidable opposition in the shape of Southampton FC’s official mascot Sammy the Saint.

Virgin Media is the UK’s only TV provider to offer all the football on Sky Sports and BT sports in one package.

You can follow all the match day action using the Twitter hashtag #AllTheFootball

Sign up to hear more about Scope campaigns.

Confessions of a mindful mum in training

Mindful Monsters is a new and exciting way to give your little ones important life skills and spend quality time together. 

Each month, you’ll get a pack of seven activity cards inspired by mindfulness. In this blog Nerys talks about the difference Mindful Monsters has made to her children, and the way they react to each other and the world around them. 

My girls sometimes find those big emotions difficult to deal with. My eldest overreacts very quickly and gets herself wound up. This can easily upset my youngest, so I’m left with a difficult situation where they both demand attention. I feel like I’ve tried many things, but nothing seems to do the trick. I was looking for ‘something’ easy, ‘something’ simple, to help build up resilience in my girls. I didn’t know what this ‘something’ looked like. I now know it’s bright, furry and full of monsters.

“Mindful Monsters really works”

Mindful Monsters really works. It gives us that helping hand in those tricky parenting situations, all while spending quality time together. Whether in bitesize form for the busy school week, or longer variations for less time conscious weekends.

And I’ve noticed a real difference in my girls. They somehow seem more aware of their surroundings. They’re certainly more curious of it. They are more in-tune with mine and their dad’s feelings. And they’re kinder to each other. More self-assured. Of course, they still fight (tell me siblings that don’t!) but Mindful Monsters has served as the tool I was searching for. A tool to develop their resilience. Help them deal with those big emotions. And most certainly a welcomed positive distraction that not only diffuses their bickering, but develops important life skills.

As a teacher, I can really see the value in this. It’s setting them up for their future. And as the months roll on, our toolkit just gets larger and larger which the girls love. More fun to pick from!

I love the balancing activity as straight away it requires concentration which usually means they stop talking/bickering! It can easily be mixed with other activities too, like balancing whilst making your best monster face! Always a winner.

An answer to difficult moments

A series of cards with smiling cartoon monsters on themI wanted to find an answer to those more difficult moments as parent, and as well as this, I found a way of experiencing magic in the everyday.

We’ve had a giggle at breakfast, we’ve focused in the car on the way to school, we’ve gotten creative while picking up groceries and we’ve relaxed before bed. Without sounding too cliché, it really has fit into our lives just as well as it fits into my back pocket (or handbag, coat pocket, book bag, car dashboard etc.).

And the fact that my donation is supporting disabled children and their families is just the biggest bonus ever. It’s just a no-brainer for me. Feel good central (sorry, embarrassing mum alert!)

Anyway, on that note, I’ll leave it there and let you look forward to receiving your first pack.

Mindful Monsters is a new and fun way to help parents develop resilience and kindness in their children.

Your family will receive a set of activity cards to your door each month, giving your children important life skills, while you spend quality time together. You’ll explore the four themes of relaxation, creativity, positivity and concentration. Simple, quick, easy to fit into your busy lives, and, as Mindful Monsters is inspired by mindfulness, the activities come with all its brilliant benefits.

Order your first pack on the Mindful Monsters website, and help us continue our work supporting disabled children and their families.

Taking risks and the importance of support – why I wrote a book about my recovery

After an accident, Ben was in a coma for a month and has been working on his recovery ever since. He hasn’t let things hold him back, even when others doubted him. To give others hope, he’s written a book about his experiences. In this blog, he shares a bit of his story. If you want more, you’ll have to buy the book!

I got run over in the Dominican Republic. I was on holiday with my girlfriend at the time. It was the day before we left, we went out for a meal and we were walking back, literally a road away from our hotel, and a car span off the road on to the pavement and hit us both. It killed my girlfriend instantly and I was in a coma for a month. I had private healthcare insurance and that paid for me to go to a private hospital while I was in the coma and fly me back to England when I was able to travel.

Starting to recover

I didn’t know anything when I first came out of the coma. I couldn’t recognise people. My parents were there and my family but I couldn’t recognise that they were my family. To start with I couldn’t speak but that came back quite quickly.

I’d lost so much weight and I was so weak. The physio in the hospital was really good. They got me to do lots of things and my strength started to come back really slowly. Once I was out of hospital, the care team supported me for about 5 months. They were very cautious about what I could do. They wanted to risk assess everything. Fortunately I had a carer, Andrew, who’s now become quite a good friend and we just went out and did things. I think my recovery would have been worse if I hadn’t done that.

Head and shoulders shot of Ben

Basically the brain injury that I had is that my neurons were shaken up so much that they lost lots of connections to other neurons. You brain is just a bit messed up. I think over time the brain recreates those connections so it is something that generally gets better but I’m not there yet. Recovery is still an ongoing process.

Not taking no for an answer

I wanted to go to Glastonbury that year and the care team was like “no, not for three years” but that just made me more determined to go. They said recovery would take a long time, anyway and there were leaps I took to aid my cognitive rehabilitation. Leaps I took into the unknown that did help my recovery. These were leaps that people told me I couldn’t do, however, this made me more determined to do this.

Deciding to write a book

When I was seen by Hammersmith hospital they did lots of brain scans and showed them to doctors, saying “What do you think of this guy, how he’s doing?” and from looking at the scan they guessed that I would be doing terribly and would be in a wheelchair. When he told them that wasn’t the case they were like “Really? How?” – it just shows that brain scans aren’t the best way to predict someone’s future. So he said to me afterwards, you need to write about this because it will give hope to other people going through this.

I went away and thought about it a lot. I wanted to get lots of voices in and it took a long time to find someone who could edit it all together. It’s all about me and my recovery from lots of different points of view and it all comes together as a melange of different stories. To begin with it was incredibly difficult but it was good writing the bits from my own perspective, my take on things.

Front cover of Ben's book showing a profile of a person's head pieced together out of ripped up paper

I hope it helps people going through a similar experience

My experience really shows just how much support you need and how difficult it is to find the right support, but given the opportunity you can do a lot. My best support has certainly been from my family and friends but I’ve had help from people from all different walks of life. I hope people going through something similar would get something from it and also their friends and family. This has had an impact on me and my family, massively.

I don’t know what will happen next. I want to promote the book and see how that does. It’s been difficult having to change my plans. To begin with I was trying to get back to where I was, especially in terms of the job I used to do, but I’ve started to accept that some things will have to change. It’s been good to broaden my horizons.

To read more about Ben’s experience, buy his book here.

If you have a story you want to share, get in touch with Scope’s stories team or visit our stories page to find out more.

With dance you’re free to move the way you want. You don’t think about being disabled.

It’s International Dance Day so we chatted to Jess, a 13-year-old dancer, who was born with Bilateral PFFD. In this blog she talks about how she got into dance, what she loves about it and shares a couple of her performances. 

I was born with a condition called Bilateral PFFD. It means that my thigh bones didn’t develop in the womb. I am also missing the fibula, one of the bones in the lower leg. I was born with feet but they were amputated when I was two and a half. I’ve also had a couple of other surgeries to fix a problem with the bone in my right leg.

I got into dance when I was about 11 because I’d been watching a TV show called The Next Step. I really enjoyed the concept of dance and how it impacted on people’s lives. So that was the start of everything. We have a dance hall at my school so during breaks and lunches I’d go in there. We also had dance classes in year 7 and 8, which I really enjoyed. I don’t have dance classes now that I’m in year 9 but on a Tuesday after school I go to a break dance club, then I go to a contemporary dance club. That’s really fun as well.

I don’t think about being disabled

With dance I like the way that you’re so free to move the way you want to and it’s just a really nice, free environment. I really like hip hop and break dance because that’s fun to mess around to. I like contemporary dance because you can show emotions through it and it’s easy to let your anger out or let your sadness out or whatever. I really like Candoco which is a dance company of disabled and non-disabled dancers. I’ve done a couple of things with them.

When I’m adapting my dancing, I just kind of figure it out as I go along. Like, when people are fully using their legs, I might mimic that with my hands or cancel that bit out and carry on with the arms. I’m pretty good at moving across the floor. Practice helps too. Once you’ve done it, especially when you’ve been at a club for a while and you know the choreographer’s style of dance, you can adapt the moves. A lot of my dance moves are improvised – I just move with the music.

I also do wheelchair basketball and sitting volleyball. When I find a sport that I really like or I find that I can move really well with it, I stick with it. It’s nice because you don’t think about being disabled, everyone’s just the same.

Jess Dowdeswell 2

Focus on what you can do

My school is pretty good in terms of inclusivity. They helped me get into sports and accommodated me. It might have been a little bit difficult getting involved in dance at first because I have to adapt it but all the people I dance with are really kind and nice so I’ve been quite lucky.

My advice for other disabled kids would be: focus on the stuff that you can do, not what you can’t do. I haven’t really experienced any negative attitudes but I’m sure there are people who have their doubts. A couple of years ago one of my friends from church, who’s a teacher, was having a conversation with her class about sport and the kids were saying “oh disabled people wouldn’t be able to do sports” that kind of thing. So I  went in with my mum and had a conversation with the kids. It was good to be able to give them a different perspective.

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

Scope exists to make this country a place where disabled people have the same opportunities as everyone else. Until then, we'll be here.

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