Stronger Together

Educating The Next Generation For A More Inclusive World

Emma portrait

Like many disabled people, I’m no stranger to poor access and bad attitudes towards disability. I’ve had my fair share of these types of situations, but it was only after a frustrating encounter with airport special assistance staff in New York that triggered something in me.

I was left shocked and angry when the person whose job it was to assist disabled passengers, openly displayed her anger and ignorance to the fact that I couldn’t walk and would need help getting onto the plane.

Usually, after an experience like that, I would go home and complain to my family. But that particular incident changed something in me. I didn’t want to quietly complain behind closed doors anymore.

I didn’t want other disabled people to be treated in the same disrespectful and discriminatory way. Instead, I wanted to do something with the aim of hopefully helping make positive changes.

That’s when I decided to start writing about disability and everything around that. So I created my blog, Simply Emma and began sharing my experiences of life as a full-time power wheelchair user living with a rare progressive muscle wasting condition.

My condition is Limb Girdle Muscular Dystrophy which causes wasting (atrophy) and weakness of the shoulder and pelvic girdle muscles, which are the proximal muscles of the arms and legs (around the hips, thighs and shoulders muscles). It can also cause weakness of the heart and respiratory muscles, so regular monitoring for changes is vital.

I never knew many disabled people growing up. There was only a small handful of people, and that included my older sister, who also has the same condition as me.

So apart from my sister, I personally never knew or saw anyone that was like me and used a wheelchair. And that was the case throughout my entire childhood and into adulthood before I started my disability blog.

Even TV and media representation of disabled people was very low to non-existent back then. Nowadays, I’m happy to see more positive representation across media which is great for the disabled community. There are more disabled TV presenters, actors, comedians, campaigners, Paralympians, bloggers and vloggers.

Creating an inclusive world is what we all need. Slowly we are beginning to see how important it is to normalise disability and be more representative and diverse.

The aim of my blog and campaign work is to help make a positive difference to a world that is often not but should be inclusive and accessible to all.

I never imagined that a sequence of bad experiences of travelling, attending live events and general accessibility issues would have developed into something positive. Raising awareness through my blog has opened many doors and created amazing opportunities including being part of the #IamNumber17 project.

Some of my highlights are being included in the Shaw Trust Disability Power list of the 100 most influential disabled people in Britain and receiving the Prime Minister’s Points of Light Award.

The award recognises outstanding individual people who are making a change in their community.

The most rewarding part of what I do is being able to help other disabled people and their families. It means so much when my blog readers get in touch letting me know my blog has helped them whether it was enjoying their first accessible holiday or giving them the confidence to go out in their wheelchair.

I want to continue raising awareness, challenge perspectives of disability and help knock down barriers to accessibility as well as helping to work towards educating the next generation for a more inclusive world.

You can follow my blog and social media updates at:

Facebook: @SimplyEmmaBlog
Twitter: @simplyemma2
Instagram: @simplyemmablog

This campaign isn’t just about us – it’s about you. If you live with, or care for someone with a rare disease, share your experience on social media using the hashtag. Help us be heard.

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