I recently attended the Muscular Dystrophy UK conference in Falkirk, Scotland to deliver a talk. In reality the talk involved sharing some chapters from my LIVING with BMD project, a book, vlog and podcast series sharing messages of hope and advice for others within the MD community.

I’m glad to say it went very well.

In view of that success, I wanted to give you all a sneak peek. There’s still work to do but I hope you enjoy it.

Introduction

For those who haven’t seen my face on social media for one reason or another, my name is Joe Logue. I’m a 41-year-old married father of one.

I work full time as Community Manager at the disabled access charity Euan’s Guide. My job involves travelling across the UK, reviewing disabled access in weird and wonderful places and advocating for disabled people everywhere.

Oh, and I live with Becker Muscular Dystrophy. I saved that until last because I think it’s the least interesting thing about me. Sure, it’s part of me, but it isn’t the extent of who I am.

Society likes to paint disability as a great tragedy, as though living with or acquiring an impairment means that life is not worth living.
Our capability is often tied to a person’s perception of us, which is why so many wheelchair users will have a story of a time when they were infantilised, when a companion was spoken to instead of them, or in some cases they were outright ignored.

Then there are those who choose to see their disability as some sort of divine test set before them by one deity or another.

But me? I consider the fact that I have Becker Muscular Dystrophy little more than a thing that happened.

I know from speaking to parents that many of you feel guilty, that you are responsible for your child’s disability. My own parents still feel that way, but it’s important to remember that you are not.

I hold nobody responsible, mortal or otherwise, for the form in which I exist. Yes, I am a disabled person, but I’m most certainly no tragedy.

My message to you all is that living with BMD is difficult, but living with BMD need not be.

The purpose of this project is to share a few lessons that life with a muscle-wasting disease has taught me. I’ll share my thoughts, experience and general advice on living well with BMD.

Some parts may be funny, some parts may be sad, but mostly, it’ll be honest.

Lesson 1: You Are Worthy of Love

Growing up, I managed to convince myself that I’d never be in a loving relationship. I internalised the media portrayal of disabled people being pitied, of being entertained but not cared for.

I felt that nobody would want to be with wee, disabled Joe, and that was hard.

Of course, my grandfather, the first in the family with Muscular Dystrophy, was married, but he tied the knot way before he knew he was disabled. Was that the loophole? Was knowing somehow the barrier to my happiness?

I felt that love, marriage, a family, were all things that would elude me as a disabled person and always would do. Who out there would want to “settle” for me? Who would want the guy who was most destined for life in a wheelchair?

I first started dating when I was around 19. I met someone through a mutual friend of a mutual friend and shortly after, it became a relationship. Things seemed positive in the beginning, and there was acceptance of my disability and the nature of it, but the relationship was the absolute worst.

It took me so much courage to break it off, as I was still wrestling with the thought that nobody else would want me. Maybe this was all I was allowed. But I dug deep, broke things off and went about my life.

After the breakup, I came to realise that if this one, admittedly unsuitable, person saw something in me, then others could too. I also realised that I wasn’t willing to settle for someone who made me feel bad every single day.

Within six months I met the absolute love of my life. Again, a chance encounter through a mutual friend of a friend, but I found her.

And now, 21 years after we first met, 17 years of marriage and one 14-year-old later, she’s in this very room with me as I write, offering silent encouragement.

In many of the communities I see online, there is a misconception that women, or indeed men, are not interested in us because of our disabilities. I don’t believe that’s the case.

I found my person by doing things, being out there and being myself.

My wife and daughter might not agree, but I’m hilarious. I think the combination of my disability, my grandfather’s guiding words and the way us Scottish folks don’t take life seriously has combined to make me a fun person to be around.

I see the world in a way many don’t, and if I don’t have a humorous observation, I’ll have a pun or dad joke waiting for you.

By being visible, refusing to hide away and being in the spaces many think we’re not welcome in, I was able to attract the perfect person.

By being funny, sensitive, caring and a bit geeky, I showed all aspects of my personality. I showed what I had to offer in a relationship, and that attracted someone special.

As for the thought that my wife would be my nurse, that worry was utterly unfounded.

While I can’t say she doesn’t do the bulk of the housework, I contribute as much as I can.
She understands that there are things I struggle to do and we work with it because we’re a team.

Please realise that life with a disability does not mean a life without love.

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