Tag Archives: attitudes

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.

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.

It makes good business sense to be accessible

Cerrie Burnell is a children’s author and actress changing attitudes towards disability through raising the profile of diversity. In this blog, she talks about why we need better representation of disabled people in the media, marketing campaigns and the public eye.

The household spend of disabled people amounts to more than £240 billion a year.

I’m not a person with a keen mathematical mind. 240 billion is a number I find almost unfathomable, like gazing at a clear night sky and trying to count stars, whilst simultaneously sipping wine – where would it end. But it’s not a fathomless figure, it’s a very real amount, and yet every year like stars at dawn, this amount of money slips away almost unnoticed by the marketing industry.

Why? Because the spending power of the disabled community has not been fully recognised. And more importantly positive representation has not been maximised. At all. The Pink pound, and The Grey pound are becoming part of our everyday life, and have landed firmly on the radar of marketers and boardroom bosses. Now, we have started to hear more about the Purple pound.

The purple pound

Purple. It’s the colour of mischief and regal gowns, and whilst it makes me think of the velvet curtains of grand theatres about to unleash drama on the world, it also holds a sense of rebellion. It’s not a colour that’s easily forgotten. I’m not entirely convinced that colour coding society by potential for spending is healthy, but it’s necessary for a brand to know who their customer is and as a member of the disabled community I have as much right to be that customer as anyone else. If labelling our money as purple achieves this, so be it. Money like people has the same value regardless of colour.

Britain’s 13 million disabled people have recently been recognised for their spending power, and now accessible products and services are being developed each day by big brands. But the disabled community aren’t solely interested in seeking out accessible products, we’re already spending money on regular products from well established brands. A wheel chair user may still want to wear stilettos. A person who is hearing impaired may want to buy headphones. Someone who is visually impaired might only wear Chanel Lipstick because it’s the shade their Grandmother wore. We are not separate from the rest of society, we are part of society, we are within the fold. Yet that’s not how we’re portrayed.

So, whilst it’s positive to see businesses starting to recognise the disposable income, that previously untapped consumers spend on retail, leisure, travel and in my case Malibu, Havaianas and ridiculously over-priced yoga leggings. What’s needed is more diversity to promote products (and services) as we also look to challenge attitudes around disability.

Getting representation in the media

Thankfully over the last few years we’ve seen brands like Smirnoff and Maltesers lead the way and feature disabled talent in their advertising. This is like a huge gasp of fresh air to me. And I’m delighted that following their campaign during last year’s Paralympics, Mars, the owner of Maltesers, has achieved much more beyond ticking the diversity box.

The adverts – a series of three commercials featuring awesome disabled talent, which I thought were both coy and hilarious – received so much positive feedback that Maltesers are now looking to extend the campaign to other markets. The largest of which being the United States and Canada. Which is great news and is exactly what we need to see more of! Bring it on.

But, more importantly for disabled people, this isn’t just about profit margins and big business. This is about us getting the representation we truly deserve. The fastest way to tackle negativity, discrimination, fear or even just insecurity is through genuinely inclusive media. Featuring underrepresented groups on our TV screens, telling diverse stories in books, newspapers and magazines is key to changing attitudes more widely.

Most disabled people still don’t feel they are well-represented in the media

At present, only 2.5% of all characters on TV screens are disabled. Eight in ten (81%) disabled people do not feel they are well-represented on TV. Shocker! That’s because we’re not, but this can very easily change. With the massive value of the purple pound looming like a spell of spending joy, big brands can promote disability whilst benefiting financially. Nobody is going to do it because it’s simply the right thing to do, it must be good business sense – and thanks to our spending power it is. Watch out world. The futures bright, the futures purple.

Cerrie supports Scope and with our mission to achieve 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.

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.

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

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.

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.

Joan Ross: A life remembered, 1939 – 2017

Joan Ross, a contributor to Scope’s Speaking for Ourselves project, died in January. Born with cerebral palsy in 1939 (when disabled children didn’t have to have an education), she went on to become  a language teacher, girl guide leader, advice officer for 17 years at Haringey Disabilities Consortium and a published author.

Using extracts from her interview in the British Library Sound Archive, we celebrate her life.

Going to schoolJoan as a child in a black and white photo

“My mother took it for granted that I was entitled to education like everyone else… She wanted me to be able to read so that I could read to myself and so on. She saved for me to go to a little private school very near where we lived, but they refused to have me so she tried the local infants school that was all on one level, and they were very reluctant. The headmistress did want to take me, she was willing to have me, but the education authority weren’t happy about me going and I didn’t have to go to school; it wasn’t compulsory.

So my mum decided to go to the education offices every day to ask them when they were going to find a place for me at this school she had in mind, and one day when she went she heard one of them say, ‘That Ross woman is here again’, and so she said, ‘Yes. And I’ll be here again tomorrow until you offer me a place for my daughter at school’.

So they did agree to place me in the school that she’d chosen, on condition that she came there and took me to the toilet twice a day, maybe more, fed me at lunch time; the teachers would teach me but nothing else, no personal care. But she was willing to do that and I was very happy there.”

Brownies and Guides

“We had a uniform which made me feel one of them. Our school icwbicc-24didn’t have a uniform so I enjoyed having an identity. I enjoyed the badge-work in Guides because that was way of proving myself.

“We didn’t really take a lot of exams and that at school, so this was a way of stretching myself and proving myself. The Guides, once they realised that I was just the same as them, except I was in a wheelchair, accepted me and I really felt one of them.

“After I left school. I was still in the Rangers, the senior part of the Guides, and one of the things the Rangers did was help with Cubs and Brownies, so I was delighted when I was asked if I would like to help with a Brownie pack, and I did that for about a year, or maybe longer. And then my own church Brownie pack was without a leader and I longed to offer to take over the pack but I didn’t want to do that because I didn’t want to be turned down. So I was delighted when I was approached to actually do that, and I did it for 15 years.

And it really compensated for not working because it gave me an important job to do which took a lot of time but was very worthwhile.”

Looking for work

“I kept on looking out for jobs. I went to a few interviews and some of them were better then others, but nothing very promising.

“There was nobody to advise me. I went to the job centre to see a disablement resettlement officer, but she really didn’t seem to have a clue how to help me. And so I just looked up jobs and I wrote to the Director of Social Services in Haringey and I did have an interview, which looked quite promising…

“They wanted to set up an advice and right centre for handicapped people in Islington in the day centre, which would deal with telephone enquiries on benefits and also lots of problems relating to disability.

“And I applied for that job and got it and it was an amazing experience.

“I wasn’t teaching but I was helping other disabled people and
carers and expanding my knowledge all the time. I went on training courses and the project was managed by the Citizens’ Advice
Bureau so we were able to go to their training courses as well.

“And the scheme lasted the year and… they hoped that they would get more funding for it to continue but when the year was up no funding materialised, at a time when the centre – it was called ARCH [Advice and Rights Centre for the Handicapped] by the way – and it was really making very good progress and helping a lot of people, and we just couldn’t abandon it because the project wasn’t being
funded. I had another worker – there were two workers on the scheme – the other person was disabled as well, he was called Melvin, and we decided to carry on working for ARCH voluntarily for another year.”

Joan’s commitment to her community then led to her being an advice officer for 17 years at Haringey Disabilities Consortium.

To hear Joan’s interview in full, go to the the Disability Voices website at the British Library Sound Archive.

Joan Ross and Lynda Bellingham
Joan Ross and Lynda Bellingham at the launch of Joan’s book

Read Joan’s autobiography, I Can’t Walk, But I Can Crawl.

 

I was told I may never walk again – now I’m going to run a Half Marathon!

Erika was told eight years ago she may never walk again. She talks about the barriers, attitudes and challenges she has had to overcome from day to day. Now she faces her biggest challenge yet – running a half marathon.

I have Ehlers-Danlos Syndrome (EDS) and a form of Dysautonomia called Postural Orthostatic Tachychardia Syndrome (PoTS). My autonomic nervous system does not work leaving my body unable to control basic functions such as heart rate, digestion and blood pressure. My connective tissue is also faulty; it is weak and stretchy causing daily dislocations and pain and exhaustion just to name a few. When I was 12 I was diagnosed with Complex Regional Pain Syndrome (CRPS), due to this I lost the use of both my arms and legs, I was told I would never walk again.

Social pressures and attitudes

Love it or hate it social perceptions surround us everywhere we go, overflowing our brains like a virus on an unsuspecting computer. Without realising, judgements are made on a person’s abilities and circumstances without real knowledge. Embarrassment, awkwardness, isolation; formed from age old perceptions and misunderstanding, feeding down through generations, effecting perceptions today. You ask why and you’re told “It’s just the way it is”.

The frustration runs through our veins like the harshest river, everyday willing the banks to burst, for reality to prevail and everyone to see we are human too. Constantly having to prove ourselves twice over, opening up our souls to strangers in a futile attempt to prove we are more than a malfunctioning body, more than a pity case, more than our disability.

What do you think of when you hear the word disability?

When you hear that word, what first comes to mind?

“I feel sorry for you.”
“You’re so brave.”
“I’m so lucky I’m not like you.”
“What kind of life is it to be like that every day.”
“You’re not living, you’re surviving.”
“I hope my children are not like you.”

For many it is these six heartbreaking quotes. For too many people, a person with a disability is seen as someone who is surviving, not living. A person saddened and ruined by their circumstances.

However to me, my disability made me the person I am today.

The person who gives everyone a chance, no matter what their past.
The person who works tirelessly every day to achieve my goals.
The person who knows the sky is the limit.
The person who is a dancer.
The person who is understanding.
The person who is training for a half marathon.

It is now 8 years after being told I may never walk again and I am currently training for a half marathon which I will be completing in aid of Scope.

Feet of disabled woman training

A half marathon for me will be an extremely physically and mentally tough journey. I don’t mean it’ll just be a little tiring, I mean one of the toughest things I will ever do!

So, why do it then?

Good question!

I have grown up in a society where disability and illness are a taboo. A vast majority of people assume that illness and/or disability mean you can no longer live a fulfilling life and that you definitely can’t do sport. This made life growing up with a disability hard for me, and even more so when I fell very ill two years ago. I felt consumed by hopelessness, overcome by the unknown, realising the things I would never do. Social perception cemented this belief in my mind, pushing me every day to give up. Telling me it was “just the way it is”.

The thing about disability is it makes us powerful. It provides knowledge of issues much wider than our own. Opens our mind to what life really is and that it is up to us to form our own future. If we are able to overcome what society dictates we should and should not be able to do then we can do absolutely anything.

So I am determined to do this half marathon! Training will be hard for me, I know that. I also know that there will be times that my health will go downhill, I will be scared, upset, angry and want to give up. There will be days when I will think it is impossible.

But I will remember the power I have. And I will remember the little girl with Downs Syndrome I used to teach dance to and the many other disabled children out there with so much passion, enthusiasm and raw talent. And I will do it for them. I will aim to change social perception so that they can grow up with less of a fight, knowing that just because you may be disabled or chronically ill it doesn’t mean you can’t do something, just that you may have to do it in a different way.

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