Tag Archives: brittle bones

The things that people say never go away

Our new report, The Disability Perception Gap, reveals the extent of the negative attitudes that are held towards disabled people – and how many non-disabled people don’t realise the scale of the problem.

Marie is a college tutor, wife and mother whose experiences feature in the report. In this blog, she revisits some funny and not so funny moments, and talks about the impact of negative attitudes.

I’ve got osteogenesis imperfecta, also known as brittle bones. It means my bones can break easily so I use wheelchair, I can’t stand or walk. I’ve experienced negative attitudes throughout my life – some awkward moments you can’t help but laugh at, and others which have actually held me back from living my life.

Because I’m disabled I couldn’t possibly have a love interest

I can’t tell you the number of times people have bumped into lampposts or tripped over on the street because they are too busy staring at me. When I’m out with my husband Dan, it can be even worse.

Once, when we’d just started dating, we were on the way home from the pub, holding hands and we stopped to look at the stars. What could be more romantic? A kiss seemed like the natural thing to do.

After a moment, I became aware that a police car was driving past very slowly. The officer was staring out of the window and was concentrating so hard on us that he ended up mounting the pavement and crashing into a street sign. We couldn’t believe it! A few seconds later he sped off, clearly embarrassed.

We still laugh about that incident now. We have to laugh – if we took these things too seriously it could start to mess with our heads.

Marie and Dan kiss outside the church on their wedding day
Marie and Dan share a kiss on their wedding day

We often hear people making comments. People don’t blink an eyelid if they see any other couple kissing in the street but because I’m in a wheelchair and Dan’s not, we become an immediate target. I think when people see us, they can’t quite believe that a guy who isn’t disabled could have fallen in love with me.

If Dan and I aren’t being affectionate, it’s a different story. Trying to convince people he’s my husband takes some doing. One time, a hospital consultant asked me if Dan was my dad! When I said no, she presumed he was my brother, then my uncle, and finally my carer. I let her go on and on before she petered out. It’s that  assumption that because I’m disabled I couldn’t possibly have a love interest.

I was told “We don’t have any jobs for people like you”

When I finished my degree in Health and Social Care in 2011 I didn’t have a lot of luck finding a job. I went to the Job Centre for support and their attitude was “Why do you want to work?” and “We don’t have any jobs for people like you.” There was no help or aspiration.

Being told not to bother working made me feel angry and upset. I’d spent so many years studying, I’d put everything into my degree, I’d worked in the past and I wanted to progress. It made me feel worthless, like I couldn’t contribute towards society like anyone else.

Woman wheelchair user holding a sign saying "#workwithme"
Marie features in Scope and Virgin Media’s employment campaign, Work With Me

I decided not to put that I was disabled on my CV because I felt like I wouldn’t get an interview. I often managed to get interviews but when I turned up I could tell by people’s reactions that I wasn’t going to get that job. I think it was largely because they didn’t understand my impairment and didn’t want to take the chance.

If you’re disabled, it can be difficult to progress in your career too. I’ve had many different jobs and at times I felt like I was being treated like a child because employers didn’t allow me to use my skills and knowledge. I ended up leaving one job. If people aren’t going to accept me for who I am and what I can do, why stay?

The things that people say to you never go away. There have been times where bad attitudes have made me feel like “What’s the point in working?” I just wanted to find an employer who would give me a chance, like anyone else would be given a chance.

This report is the start of something, not the end. We will be working to better understand how negative attitudes impact on disabled people, and how these can best be tackled.

There’s no single fix for this problem, and as part of our campaign for everyday equality for disabled people, we’d like to hear about your experiences and what you would like to see change.

Will you support our campaign by telling us your experiences?

Millions of disabled people feel lonely, including me – let’s change this

Shani is an events manager, disability campaigner and entrepreneur from Walsall. She features in Scope’s new What I Need To Say campaign which highlights the isolation that millions of disabled people face. In this blog, Shani shares her own experiences.

At certain times in our lives, we are all likely to experience loneliness. We often talk about loneliness in elderly people but, as Scope’s new research shows, loneliness affects so many disabled people.

This can be down to poor access to services, inaccessible transport and venues, and financial challenges. When you face so many extra costs related to disability, it can stop you from being able to go out and do things like everyone else. That’s why I launched the Diversability Card – a discount card for disabled people.

Social attitudes are also a significant barrier. Many struggle to see the person beyond the impairment or condition and act awkwardly. One in four people have admitted to avoiding conversations with disabled people because they worry about causing offence or don’t know what to say. This really astonished me. Personally, I feel sorry for the non-disabled UK population who are missing out on interacting with 13 million of us fabulous people!

With so many barriers to contend with, imagine being a disabled person, experiencing the same life transitions as everyone else, but not being able to participate in the same way. No wonder disabled people feel lonely.

My own experiences of loneliness

Being part of the ‘What I Need To Say campaign’ by Scope made me really reflect about the times I have experienced loneliness or isolation, which has drifted in and out of my life over different periods.

As a young child, I attended a special needs school which made keeping in touch with friends very difficult as we lived miles away from each other. It also meant that I was sent to a separate school that my siblings, cousins, friends and neighbours attended. Whilst it was the best place for me because of the care I needed for my condition, it was hard to maintain friendships and any sort of social life.

Over the course of my childhood, I spent a lot of time in hospital with broken legs due to my condition Osteogenesis Imperfecta (brittle bones). I would be in hospital for a minimum of three months at a time, missing school and home whilst only having adults to really talk to. I was very lucky that I always had lots of family coming to see me during the visiting time, but this is such a short amount of time in what used to seem very long days as a child.

I’ve also experienced loneliness as an adult, being excluded from social situations or activities due to my condition or people making assumptions about what I am able to do, or not. It’s really frustrating, especially as I’m a very independent person who will always find an alternative way of doing things.

Shani smiling, stood on a cobbled street

Ending loneliness

I feel that increasing the awareness of different conditions and dispelling misconceptions about disability are major steps in combatting the ‘silent epidemic’ of loneliness and isolation.

Also, if you are a friend or family member of a person with an impairment or condition, take a moment to consider how they might be feeling, especially around this festive time of year. It can be as easy as making a quick phone call or popping in for a cup of tea to brighten someone’s day.

Too often disabled people struggle to access the right emotional support, advice and information. As a result they feel like no one truly understands, leaving them disconnected and isolated from those around them. This is particularly heart-breaking at Christmas.

Please help us this Christmas by getting involved with our What I Need To Say campaign. Share the message, tell us your stories, and donate to Scope so we can be there for people who have nowhere else to turn.

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.