Society could benefit greatly from young people with disabilities & their unique insights

25 March 2015

Supporter Blog: Lachy Beckett

I was diagnosed with Juvenile Dermatomyositis (JDM) when I was three years old. JDM is a rare autoimmune condition which affects the muscles and skin. It makes the muscles feel very weak, making it difficult to walk or do simple tasks like getting dressed. The disease burnt out when I was eight, so I was lucky. I'm 33 now.  I experience no long-term effects from the disease apart from slight muscle weakness and a limp. I've been off all medication since I was eight.

 Throughout my teens and twenties I just wanted to forget the whole experience of having a serious illness but after coming across some children who currently have the condition, I decided a couple of years ago to get involved with creating awareness of Myositis (both juvenile and adult forms).

I am now on the Committee of Myositis Association Australia www.myositis.org.au  - a volunteer organisation. I am also very interested in bringing issues of disability to the forefront, particularly for young adults. I believe society could benefit greatly from young people with disabilities and their unique insights and drive.

 

I guess I've sometimes felt in limbo with my disability. Some people notice it too much and others don't notice it enough. I've never been in a wheelchair and yet because of my disability, I can't walk as far or as fast as a lot of other people can or participate in a lot of physical activities. One might think that having a disability makes you dependent but it actually makes you independent because you have to do things your own way. You find what works for you.

 

The ugly side of having a disability include being stared at when I walk. I've had some taxi drivers refuse to take me to a particular destination suggesting that I should walk instead because it 'wasn't worth their while' (I guess the fair wasn't large enough). I've also realised what a nuisance stairs are for people with disabilities!

 

For many years I was reluctant to open up about my illness. Being a young guy probably had something to do with that! I felt that

it should have nothing to do with who I am as a person and I even felt it degrading to be associated with it. I thought it wasn't 'cool' to talk about it. I didn't want to be considered 'different' from other young people. Yet, I've actually felt a weight has been lifted off my shoulders since I've started opening up to more and more people. People seem genuinely interested in my experience with Juvenile Dermatomyositis and want to know how they can get involved to help others. I think it helps you to see people's true colours. You mostly see the good in people. As I've grown older, I've realized that in a way, some of the things that define who I am, are probably largely due to my experience with Juvenile Dermatomyositis. It has given me a different perspective on certain things and a recognition of what's really important in life.

 

I've been overseas, I've graduated from university. In my spare time, I'm a keen musician. I've been playing guitar since I was fifteen and love singing. I have written songs that have been inspired by my experience with Juvenile Dermatomyositis and those inspiring people I've had the opportunity to meet who have also had the disease. I'm also active on social media, attempting to create more awareness of Myositis.

 

Regards,

Lachy

 

Blog: http://awarenessforjm.blogspot.com.au/


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