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Peter Speaks with Jo Eames at the Action Duchenne Conference

January 16, 2018

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Visibility is Not Inclusion

September 13, 2017

I’ve learned a lot over the years. Perhaps the hardest lesson is that visibility of disabled people has never equalled inclusion.

I’m a person immersed in a minority community. From disabled people themselves to their parents and guardians, we all seek one thing – to be included in society. I think that is the same for all minority groups. We do not seek special treatment, to be elevated above others. We simply seek to be able to live our lives as true, fully included members of society.

I hear on an almost daily basis the word equality. Note that I use it sparingly. Equality is giving every child in a classroom an apple for lunch. Sure, they have all been treated equally. But some do not like apples, others cannot eat them. Some might even be allergic.  Alas, some children go without lunch.

Have you ever asked yourself what the impact of discrimination is?

The children who go without lunch do so through no fault of their own. But as the day goes on they get tired, their belly rumbles, their head might hurt. Anything the teacher is trying to help them learn, they will not. At very least, not as well as their peers who were able to eat their apple. The children who had some lunch are able to learn and progress up the stairs – one step at a time. Others have missed a step, and their success depends on whether they can jump over the gap. Those who miss more than one step find it increasingly difficult to keep jumping over the gaps.

That is, in essence, the product of a society which does not fully include all members.

I lost a whole flight of steps twice in my life. I lost them purely because I use a wheelchair. I spent two years of my life out of education because of something entirely beyond my control. And then, just a few short years later another flight of steps was knocked out when I wasn’t allowed to move to another school, again because I use a wheelchair and more hoops than a 100 metres hurdles race had to be jumped through.

I survived those. Together with my family, we rebuilt those steps that were stolen from me. Many others are not so lucky. They are left behind, left struggling to catch up. Many are never able to catch up.​

​Mandy Harvey is a Deaf singer making waves around the world through her appearance on America’s Got Talent. Last night she made a point I have often held true.

My life doesn’t need sound. Music doesn’t need sound.

Now, as Deaf as I am, I live in a hearing world. Music very much is a part of my life, and I think if I wasn’t able to hear I would still be pulled in by the gravity of music.

I do not need to walk. My life does not depend on my ability to walk.

To the parents, I apologise if this is hard for you to absorb at this point in time. But take the lead from your children. If your child has never walked, they may never have the desire to. They certainly do not need to walk to succeed in life.

Medical technology enables people like me to live life for longer. Whether it be ventilators or feeding tubes, I owe my life to the scientists and pure magicians who are putting things together, and working with patients like me to find new ways to ensure we can life productive, healthy lives.

Would things be easier if I could walk and had ears? Probably. But the experiences SMA and squiggly ears give me are enriching. I live an incredibly unique life and – as I said when I was 10 – there’s no-one else I’d rather be, but me.

Disabled people like me are living in our communities. I know some are subjected to vile hate crime, while others are treated with the respect everyone deserves. As recently as 30 or 40 years ago, we were institutionalised and forgotten because we didn’t walk, or couldn’t see or hear. Our bodies were just different. Sadly, this still happens in some countries today.

We are ever increasingly present, but with a lot more work to do in terms of representation. It is true – we are the forgotten minority. Equality will not achieve what we need – more jobs, better public transport, a fairer education system.

Inclusion will.

It is time that I put out into the world how I believe we can become a better society. We can, if we want to. We have testing times, but we are all united by the fact that we are human.

The world only needs inclusion and respect.

It will benefit us all.

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