Tag Archives: equality

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.

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.

“Yes I Can, If…” – campaigning for better disability access

Will Pike is a games developer from London whose parody of Channel 4’s Superhumans advert has gone viral with over half a million views. Tens of thousands of people have signed his petition to ask the two high-street chains which feature in the film for better access.

In this blog, he shares the story behind his campaign and talks about the changes he’d like to see as a result. A text description of the video is available at the end of this blog post.

In 2008 I went to India, on the way back home we had a stop over in Mumbai and the hotel I was staying in was attacked by terrorists. 168 people died, my spine was injured I am now paralysed below the waist.

I’ve been in a wheelchair for eight years now and in that time have been through ever emotion under the sun. I have days when I just can’t be arsed with the barriers and negative attitudes. I made this film because too many shops and restaurants are effectively off limits to wheelchair users like myself.

Inspired by the Paralympics

After the London Paralympics I was expecting there to be a big shift in places becoming more accessible but it just hasn’t happened. Two weeks before this year’s games started I approached my friend Heydon Prowse about the idea and he got a team of people together to produce the film. Errol Ettiene directed  it and did an incredible job, the team turned a good idea into a slick, professional-grade commercial.

It tops and tails with Paralympic references because I wanted to show how day to day life can feel like Paralympic event for a wheelchair user. But whilst the whole thing was inspired by the Paralympics, these issues still remain for disabled people now the games have ended. This is bigger then just me having a unique experience, this is a global issue indicative of a massive absence of consideration for disabled people. My experiences aren’t isolated and sharing them makes them more powerful and potent. It turns individual struggles into a social issue.

The film isn’t in any way a criticism of the Superhumans ad, but it could only ever do so much. Channel 4 started a relay race about disability awareness and they passed the baton on. They didn’t know who they were passing it on to, but it just so happened it was me. I’m leveraging the awareness their brilliant ad created to further the message. My film couldn’t exist without theirs and whatever success we get is their success too.

Will sat on a sofa against a brick wall

The petition

I’ve been asked why I chose to focus my petition on American Apparel and Caffè Nero and the honest answer is, it was just their lucky day. We were filming on Tottenham Court Road and it just so happened they were the shops that didn’t have wheelchair access. But it was also important that we didn’t pitch this campaign at one-off shops because whilst they have a responsibility, it’s the big chains that have a major responsibility and the ones who are neglecting their civic duty. It could also have a domino effect across all their stores.

It’s not that people are fundamentally thoughtless, it’s just that it’s simply not in the social conscience to be considering these things. It’s only when someone comes along and questions access that things will change.

The people I spoke to in the film felt bad and wanted to help but they are purely innocent in this whole thing. It’s the companies they work for who are responsible for disability access and inclusivity. It’s irresponsible to expect hapless shop assistants to have to deal with that situation. I hope American Apparel and Caffè Nero can see it from that perspective too, it will protect their staff from these embarrassing and awkward situations that they shouldn’t have to go through.

Reasonable adjustments

The Equality Act states that all buildings and public places have a responsibility to make reasonable adjustments to ensure disabled people are not disadvantaged when accessing their services.

However, in terms of holding public places accountable, it’s actually down to the customers and patrons of that establishment to draw attention to their inadequacies. If that premises doesn’t then do something about their lack of access or facilities, that person is then responsible to bring them to court. Which basically means that all those people with disability – who may or may not have had their benefits cut, or are finding it difficult to gain employment, or even struggling to leave the house – are the ones who must embark on an inevitably time-consuming and costly legal case.

We really hope that this film, though aimed at Caffé Nero and American Apparel, is able to shine a light upon a flawed and, frankly, ridiculous system. It should not be the responsibility of each and every disabled person to flag up a high street chain; it should be the responsibility of the Government and Councils to assess disability access, educate businesses, and ensure funding is in place for reasonable adjustments.

People may think little things like step-free access won’t make a difference to the majority of the population, but it makes a massive difference for a selective few which in turn has a positive influence on the relationships we have with non-disabled people. In turn the whole community will be accessible and better for everyone. And that’s where the #AccessForEveryone hashtag came from.

Will in his wheelchair outside a restaurant where there's a step

What’s next?

We just have to wait and see! I haven’t been contacted by Caffè Nero or American Apparel, but I wonder whether someone is going to bring it to the big bosses. One way I’d like that conversation to go is that the big boss turns round and says: “Are you telling me we haven’t got step free access in our Tottenham Court Road branch?! Right, heads are gonna roll!” That’s far fetched but I am an optimist at heart.

Both brands have a real opportunity to turn this bad situation good by handling it well. If they acknowledge they were wrong and make changes they can come out of this smelling of roses and will get so much good publicity from this. I will be giving them every chance to handle this magnanimously, with humility, and with a real ownership. But if they don’t, we will do everything we can to highlight their ineptitude.

They really can lose a lot of business because of this. Some people have been commenting saying they will boycott these shops until they make a change and if that becomes the consensus, if that becomes the rallying cry, then together we can change a lot.

You can visit change.org to sign the petition or follow Will’s progress.

Will’s story is also a great example of disabled people being ‘bold and loud’ as consumers – something called for by the Extra Costs Commission. Led by Scope, this was an independent inquiry that looked at ways to drive down the additional costs faced by disabled people. Next month a report will be published reviewing progress with the Commission’s recommendations for tackling extra costs.

Video description: Paralympics billboard, zooms into the word “superhuman”. Alarm clock turns to 7.00am. Man laid in bed opens his eyes, sits up, and smiles. He spins around his bedroom in his wheelchair. Plays plastic toy trumpet. Dances into the bathroom. Sits in the show, miming the lyrics into the shower head. Puts a shirt on, grabs his hat with a reaching tool. Leaves his house, flipping hat onto his head. Wheels down the a busy high street. Tries to enter Caffè Nero, wheels crash into a step. Tries to enter Pizza Express and speaks to a waitress about accessible toilet facilities. Does a wheelie and dances down the street. Goes into American Apparel and talks to staff member. Wheels into a pub, stops himself at a flight of stairs. Then wheels down the ramp, sits with a friend both clinking their pint glasses. Text reads “Leaving the house can feel like a paralympic event for wheelchair users. change.org/accessforeveryone”.

Three things the new government needs to remember about disability – #100days100stories

Guest post by Josie from Bristol. Josie has a number of impairments which affect her health and mobility; she uses a powered wheelchair. She is sharing her story as part of our 100 Days, 100 Stories campaign.

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.Close-up headshot of Josie, a woman in her late 30s

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.

Two days away from the general election, here are three things the next government needs to do to make sure disabled people are better supported.

1.  Social care should support us to live, not just to survive

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.

My basic needs are met – I’m clean and I’m fed. But I haven’t got any allocated 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.

I understand why we’re in the position we’re in economically, but I worry that there will be more cuts to social care, and I really can’t see where they are going to come from.

2.  Remember that benefits are people’s lifeline

There’s nothing in my life that can be cut. Every penny that comes in goes back out, and I have to budget very carefully. There’s no ‘fat to trim’, as politicians like to say.

If, for example, my benefits were taxed, the money would come out of my food budget. I wouldn’t be able to afford online delivery for my shopping – I’d have to send a support worker, and miss a meal or a shower.

Josie, a disabled woman, smiling with her teenage son
Josie with her son Olly (her daughter Chloe is in the photo at the top of the page)

There’s a belief among some people that many disabled people don’t want to work, or choose not to. In fact, it’s the exact opposite. I didn’t choose to get ill, I didn’t choose to become disabled.  I actually found it very difficult to come to terms with the idea of claiming benefits.

Soon I’ll be reassessed for Personal Independence Payment (PIP), and I’ll have to justify myself again – there’s always a huge fear that what I have will be taken away.

3.  Disabled people deserve a role in society

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!

The loss of the Independent Living Fund has been a blow – 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.

I’ve watched a lot of political debates such as Question Time over the past few years, and I haven’t seen a single person speak who uses social care. There have been a few family members, which is good, but disabled people should have a chance to speak for themselves.

A question of equality

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.

Politicians should look at my situation and ask themselves: “Would I be prepared to live like that?” And if the answer is no, they should be ready to make changes.

Josie runs a website offering support to people with idiopathic anaphylaxis at www.iamast.com

Tomorrow is the final day of our 100 Days, 100 Stories campaign. Find out why we did it, and read the rest of the stories so far.

“I want my son to know there’s nothing he can’t do” – #100days100stories

Guest post by Kelly from Harrogate. Kelly’s story made headlines when her 12-year-old son Joe, who has cerebral palsy, couldn’t go and see a film at his local cinema because there was no wheelchair access. Ironically, it was National Disability Access Day – and the film was The Theory of Everything, the biopic of Professor Stephen Hawking. Here she shares what happened next.Kelly with Joe sitting in his wheelchair in school uniform

Our local cinema is a listed building and they cannot adapt it to allow wheelchair access to all its screens – fair enough. But when I phoned them to ask if they could perhaps show the film on an accessible screen over the weekend, they said no.

I was so shocked and sad. I am a single mum and I have four other children, so it takes a lot of organising and planning to do anything at the best of times.

So I had a rant on Twitter, like you do these days, and the BBC picked it up. Suddenly my mobile phone was ringing all the time – the BBC Look North team wanted to speak with us, then the local radio stations and then Sky News! I couldn’t believe that all these people wanted to hear about what happened.

The journey I’ve been on

I think I have gone through every emotion possible since Joe was diagnosed at nine months old. I felt denial, anger and guilt. I didn’t want to face the fact that he was disabled.

But then when Joe was three, he started attending the nursery attached to a special school.

One day we were called to a meeting. We were put in a room, but Joe wasn’t there. Then the teacher came in and said, “Joe wanted to show you something”.

Then in came my little boy, wheeling himself along for the first time ever. I had always carried him before. Gosh, he was so proud, so pleased with himself!

I just started crying. The physiotherapist put her arms round me and said: “He needs to be in a chair. He needs to know that this is what he needs, and you have to help him.”

That day, for the first time ever, I used the word ‘disabled’. I saw that my boy would always have to face things I would never fully understand. But as his mother, I was going to make sure that he had access to everything that my other children had.

That’s the reason I decided to stand up and fight about the cinema. I felt I had to give my son a voice, and show him it’s okay to say: ‘I want what everyone else has, please’.

I want him to know that there’s nothing in this world you cannot do – you might just have to do it a bit differently.

Kelly and Joe at Paralympic stadium with the flame in the background
Visiting the Paralympics in 2012

Tackling the issue head-on

As a result of all this, I’m now in the process of setting up a website about accessibility in my area. It’s a review site for days out and attractions, and at the moment we’re concentrating on Leeds, Harrogate and York.

There’s nothing worse than getting in the car for a day out and then having issues with access, so we collect details about disabled access. It will also have a page of all the disabled-friendly clubs in the area.

Families also leave us reviews of places they have visited, so that people know how accessible it really is. Let’s face it – just because it has a ramp at the front door doesn’t mean it’s wheelchair-friendly!

We finally saw The Theory of Everything, and as we left the cinema Joe said:  “I can do whatever I want mum – look at Professor Hawking.” I was so proud.

Kelly shared her story as part of our 100 Days, 100 Stories project. If you’re a disabled person or a parent of a disabled child, email us at stories@scope.org.uk to share your story.