Tag Archives: brittle bones

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.

Employing disabled people isn’t just about building ramps

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

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

Having the confidence to ask for what you need

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

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

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

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

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

Everyday Equality by 2022

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

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

Tell us what would help to improve your work opportunities

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

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

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

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