“A wheelchair is just a seat you’re sitting in.” – International Wheelchair Day

Today (1 March) is the ten year anniversary of the first International Wheelchair Day (IWD). To celebrate, we spoke to the event’s founder, Steve Wilkinson, who told us how he turned it into a global event and why it’s such an important date in the calendar.

I was born with Spina Bifida back in 1953. I had a wheelchair when I was a kid, but preferred to walk, which I could do thanks to the calliper I wore and the walking sticks I used right through until about six years ago.

In 1987 I was on holiday in Florida and went to the Disney theme parks and hired one of their chairs. The freedom it instantly gave me was huge. When I got home, I got my own wheelchair and it allowed me to go much further distances and more comfortably. I couldn’t get anywhere without it now, it’s my life.

I started to campaign about wheelchairs and disability in the 90s when I saw how difficult it was to get into places and the access issues wheelchair users faced.

I worked with a lot of organisations on accessibility issues and campaigns. It made me realise that I wanted to start my own business. I’ve learnt over the years that a lot of good ideas fail because they don’t get enough mass engagement. That’s the biggest thing you need to give an idea momentum.

International Wheelchair Day was born

In February 2008, I started researching International Wheelchair Day and was surprised to find that there wasn’t one. I’m quite an adventurous person so I thought let’s just do something and see what happens.

I chose 1 March in memory of my mother because when I was a child, she was everything to me. She pushed me, both physically in my wheelchair and also as a person to take on challenges and be a positive person. She was my inspiration.

So on 1 March 2008, I put a post out on the internet about it announcing ‘Today is International Wheelchair Day, I know this because I just invented it’. However, these were the days before Facebook and Twitter were big things and nothing happened.

A year later I put another post up and again nothing happened. The third year, I discovered that a disability group in Salisbury had recognised IWD and were having a meeting about wheelchair access. I thought, ‘get in, somebody’s found it!’

It was 2011 when things actually took off. Hannah Ensor, a wheelchair user and a talented cartoonist, got in touch to say she’d heard about IWD and that she’d designed a logo for it. So that was it, out of the blue we had a logo. For every year since, Hannah has designed the official logo and every year it’s slightly different.

That was important because someone else had recognised the day and made it feel official. From there it’s just grown year on year.

Going global

In 2012 I went to Australia and met with a disability group in Adelaide and Gail Miller, the author of a book about life in a wheelchair. They were keen to recognise IWD and we held an event attended by the South Australia Disability Minister and Kelly Vincent, a member of the South Australia parliament (who was also a wheelchair user). They also helped me get some interviews on the radio in Australia and it just really took off there.

That year I also got an email from a woman in Nepal. They were having a parade of 80 wheelchair users in Kathmandu to celebrate International Wheelchair Day. For me, that’s become symbolic of what this day is. It’s all about engagement of people in a collective event. Last year they had 239 wheelchair users in their parade. They’re doing it again this year.

IWD2016 Nepal 5(Parade with close up banner)
International Wheelchair Day parade in Nepal 2016

What’s next?

Every year I wake up the day after IWD, go online and discover all these different events around the world where people are celebrating it. It’s really gone viral. If you google it now, there are thousands of mentions of it. It’s got a life of its own!

A girl got in touch with me recently and told me that she wasn’t able to get out of bed most of the time. However, the five minutes that she spent outside in her wheelchair on IWD was her celebration. I just think that’s a fantastic story.

The wonderful thing about IWD is that there’s no one way to recognise it. People celebrate it in very different ways.

There are big events happening across the world. People mark IWD here in the UK and in Australia, Nepal, Senegal, South Africa, Bangladesh, Pakistan and the United States of America. There are probably events elsewhere that I’m unaware of. It’s fantastic!

This year is the 10th anniversary of the first International Wheelchair Day, I hope it continues to grow and more people can engage with it and feel a part of something.

 Find out more about International Wheelchair Day.

“I have problems with my mobility and I’m at home every day. As a result, my energy bill has shot up”

Our new report, Out in the cold, reveals the high costs many disabled people face for their energy. 

Over a third of disabled people say that their impairment or condition has an impact on their energy costs. Many disabled adults have worried about paying their energy bills, and many disabled households are living in fuel poverty. 

This follows our research published last week which found that on average, disabled people face extra costs of £570 a month related to their impairment or condition.  

Paying more for energy is something that Lynley knows all too well. When she became disabled her energy costs shot up. In this blog, Lynley talks about the impact this has had on her life.

Three year ago I suffered a sacral spinal fracture due to early-onset osteoporosis, which damaged nerves and has left me with permanent neurological pain.

Before I became disabled, I never gave the heating a thought. It wasn’t on very often, but things are different now. I have problems with my mobility and I’m at home every day. As a result, my energy bill has shot up. 

When you can’t move around, you feel the temperature much more and being cold affects my pain levels enormously. I have to wear extra layers of clothing to keep warm and I need the heating on constantly.

I also have an electric blanket for my bed and an electric heat pad which I use to help with my pain. I use electricity to charge my electric powerchair which I need to use to get around outside the house. This needs charging frequently so it’s another additional energy cost.

My bill is so much higher than before. Coupled with the loss of my income as a teacher, this has made ‘getting by’ very difficult. Personal Independence Payment (PIP) helps but there is very little money left over for anything else. I have to prioritise heating so that I’m not in pain.

Life is now very different

Since becoming disabled, my living standards have changed dramatically. I was a professional secondary school teacher in a large comprehensive and was managing five members of departmental staff. I had a large amount of disposable income and enjoyed a fairly busy social life. Things are now very different.

I’m unable to work and now try my best to manage on my benefits  and my small pension but it is very difficult sometimes. Energy costs take up a substantial portion of my income. It’s even harder where I live because we are unable to get mainstream gas and have to rely on oil central heating which is extremely expensive.

Any kind of social life is extremely difficult, holidays are a luxury and disposable income is now virtually non-existent.

What would help

It’s not fair that disabled people who need more energy and who might be on lower incomes  have to meet these extra costs themselves.  There should be more support and awareness. I haven’t received any form of financial help with my energy costs.

Benefits like PIP are there to supposedly fill the gap but it is insufficient to really make a difference. I would like to see a different energy tariff applied if there is a disabled person within the home, much the same as the council tax rebate we are eligible for.

That would make a big difference to my quality of life.

Help us to get people talking about the extra costs. Share our report on Facebook  or Twitter using the #ExtraCosts

We also have information about support with your fuel bills