LGMD, Disability and Advocacy.

solid lime gree colur with a megaphone in the centre also green

Why doing our bit to highlight diversity is a good thing

I was diagnosed with Adult Onset Limb Girdle Muscular Dystrophy in my early 40’s. Until then I had been in the ~82% of non-disabled Australians, and had no direct contact with anyone who was physically challenged by the environment around us.  

In the initial few years succeeding my diagnosis I was able to conduct my life pretty much as I had before. I felt that I was still ‘normal’ and attempted to ignore the ever creeping decline in my abilities.

Eventually I realised that I wasn’t sharing everyday experiences in the same way as I used to with my friends and family.

Adapting

Woman in wheelchair with another beside her looking at the camera on a tripod with many yachts and the Bolte bridge in front of them.
Photography play

Hobbies and interests such as photography, gardening, baking and sewing became less autonomous and spontaneous and more reliant on assistance from others. Conversations regarding new methods in cooking became increasingly irrelevant. Despite equipment adaptations including a lighter camera, photography and all its artistic embodiments was not available without significant compromise, including having another person programming the settings and shooting. Sewing and quilting has followed a very similar path for me. Socialising involves considerations regarding toileting, resting beforehand, ensuring accessibility and not feeling self-conscious having your food cut up for you – and significantly adapted (let’s say improved) dance moves.

This new way of living was new to not only me, but my friends and family who have supported  and assisted me in many ways. It also became somewhat mentally isolating, and no one quite gets it like a like-minded community of others going through similar experiences.

The power of connection

So I joined a few Facebook private groups – thank you new age technology. Through cyberspace we bond, cry, complain and boost each other. And we also find out about research and opportunities through awareness campaigns to advance the profile and recognition of LGMD to the wider general public.

A corner timber curved desk with no legs . On the desk is P Mac, sanitiser bottle, tissue box, Orange drink bottle. Plant is on a top shelf and on the floor. The sun is streaming through the window on the left of the photo.
My home corner-space where I connect with cyber-space.

Nevertheless, I was unenthusiastic to be involved in such campaigns, I was doing my quiet form of self-advocacy through blogging. This in itself was a big leap of faith that I was adding value somewhere while cathartically and, at times mortifyingly telling my LGMD story online to the global public. Rolling through the years I have, through Instagram particularly, become part of an ever growing, gigantic community of like-minded advocates all making their valuable presences felt in numerous ways.

Genuinely impressive LGMD and disability advocacy is occurring everywhere despite, and certainly because of, oppression, injustice and prejudice. Pushing for respect, understanding, equality, and recognition in many ways; creating and selling T-shirts with ironic memes, public speaking, educating to schools and general community, or flood Instagram with beautiful images of non-normative bodies of those who deserve to be able to contribute to, and enjoy this world. I am in awe of such dogged and often selfless determination by hundreds, if not thousands of netizen’s (citizens of the net) to have the voice of their community acknowledged on the grand world stage.

Advocacy

Advocacy educates.

Advocacy makes us think beyond ourselves, and beyond the accepted way that our world has been designed to cater for fully functioning bodies.

Advocacy gives bigoted and ableist jokes and memes a human identity.

Advocacy eliminates shame – in having physical and mental impairment in world ill equipped to accomodate.

Advocacy creates respect for difference, and a humility that none of us are immune to genetic mutations, accidents or failing organs.

Advocacy can create change.

Advocacy is vital for a flourishing, diverse society.

Together we are stronger

What I have slowly learnt is that advocacy is not just joining campaigns whose purpose is to raise funds towards services and research. Campaigns can simply be to raise the profile of a particular element that requires broader recognition for all the reasons above – and  maybe that is enough. Because any contribution made to the whirling sands of actions and conversations in your advocacy space is another important particle.

Contrary to my initial reservations on the effectiveness of awareness days or months, designed mugs or Facebook profile frames, I’m a convert to any and all of the ways of simply lifting the LGMD profile .

In a globally connected world full of the clamour of voices I am happy to be part of the growing contributions of many to the societal recognition and understanding of Limb Girdle Muscular Dystrophy (LGMD) and disability. And I hope that in your way you can be too, regardless of your abilities.

Because together, we really are stronger.

6 thoughts on “LGMD, Disability and Advocacy.

  1. Glen Fozzard says:

    Honest words are always the most inspirational to me, thank you Leanne for getting me through another day of hope in the human condition, connecting us through empathic resonance via your words. Glen

Share your wheel thoughts here