Hands hold up a box with a special insignia inside.

Awarded an MBE for Disability Advocacy

If I were to say 2023 has been a wild ride, it would be a huge understatement - and there are still several weeks left!

Disability activism works toward inclusion

I live in the UK, and my work life mostly consists of activism. Sometimes that work is very public, but actually, most of the time, it’s quiet, behind-the-scenes work that takes years to achieve. I’ve been working to achieve inclusion for disabled people here since I was 17 - for over 15 incredible years!

In May, I received a letter from the Cabinet Office. It’s not wholly unusual for me to engage with high levels of government, and there are so many pieces of legislation coming up that I automatically assumed they were seeking some collaboration on policy.

How wrong I was!

Unexpected recognition

It was a letter informing me that I was to be recommended to His Majesty King Charles III for an MBE - Member of the Order of the British Empire!

The UK has an Honours system whereby ordinary civilians are recognized by the Monarch for their work. Many incredibly deserving people who dedicate their lives to their community, sport, or other aspects of life here are recognized for making our corner of the world a better place. I was to be recognized for services to people with disabilities.

I live with spinal muscular atrophy (SMA.) Disabled people themselves are not often recognized and so it’s an honour of itself to be a disabled person on an Honours List. But to receive an MBE is a huge accolade in any book!

I accepted the Honour and then had to spend several weeks keeping quiet until it was announced in June! At that point I was just delighted to be able to share some good news with our community here and all those across the sectors I work with.

Visiting Windsor Castle, which is incredibly accessible

However the biggest part? That was having the invitation extended to visit Windsor Castle for an Investiture.

An Investiture is a very special day. You visit a Royal Residence - usually Windsor Castle or Buckingham Palace - to receive your insignia, which is a kind of medal worn on your lapel, from a senior member of the Royal Family.

At the very beginning of my road into advocacy, my story of challenging the education system here was published in a book by the Equality Commission of Northern Ireland. My legal challenge was the first time a court in Northern Ireland found the education system had discriminated on the grounds of disability. And so it was listed as one of the ten groundbreaking cases in the first ten years of the Equality Commission.

That book was presented to Her Royal Highness Princess Anne and I was given the opportunity to meet her to talk about inclusion in education and STEM - as I wanted to study Genetics!

Imagine my delight when it was Her Royal Highness Princess Anne delivering my Investiture!

This was the first time I have got on a plane since before the pandemic. I was a little frazzled but excited by the experience! Windsor was a lovely place with lots of dogs I got to meet, which was lovely.

A conversation about disability rights and inclusion

Windsor Castle was incredibly accessible with lifts as smooth as silk. The rooms we visited were steeped in history, incredible artwork and filled with people who did brilliant things for their communities.

Accompanied by my mum, two sisters and my nephew, I had a fantastic day. My conversation with Her Royal Highness Princess Anne focused on how wheelchairs have changed over time and whether or rights and inclusion are improving.

I believe we have a lot of work still to do. And with an endorsement like this I can hardly wait to keep working for the rights of disabled people everywhere.

Disabled people are unconditionally worthy. And I won’t stop until the world recognizes that.

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