Acquiring the symptoms of a progressive condition takes some getting used to as I have touched upon in a previous post  To Wheel, Or Not To Wheel . But why do so many of us feel the need to cloak these changes in an ugly cape of lies (to ourselves and others), excuses and denial?. Why do we cling to the old normalcy so frantically?. And what harm are we doing to ourselves in the process?

My diagnosis came when I was quite mobile, active and social. I felt some tiredness ascending stairs and after a gym session but I had no reason to feel disabled. So I took the news seriously but with a strong sense of denial that surely my symptoms wouldn’t get much worse. This is Limb Girdle Muscular Dystrophy (LGMD) and adult-onset symptoms generally mean that the progression will be ‘slow’(relative to what is painfully unclear). Heck – some people with LGMD never end up in a wheelchair. In those early weeks of seeing specialists and organising therapies, my first ‘I am disabled’ moment came when the rehabilitation group booked me into the ‘Para Room’. Actual words from the receptionist booking me in. I cried. Surely I am not disabled.

This brings me to my shameful past as an ableist. Don’t worry if you haven’t heard of this before. Kudos to our progressive world ableism is a relatively new word (1985ish), defined as discrimination against disabled people. And this, like all types of bigotry comes in many forms from covert attitudes to overt physical abuse. Over the last 11 years since my diagnosis and as my physical abilities have deteriorated I have been terribly harsh and bullying and unaccepting of myself. What I and many others have done is hide and camouflage, dissemble and whitewash.

Our self talk has us feeling ashamed for unmanageable personal needs, embarrassment for our inability to drive, feeling inadequate in our inability to provide for our families or ourselves-be that financially or running the household.

We keep walking independently until we’ve had so many falls resulting in lacerations and broken bones that our bodies are screaming for assistive aids.

We cut off our social lives, too embarrassed to admit that we can’t get off a toilet or a couch unaided. Or knowing that dancing would end up with a face plant and never mind the muscle wasting induced prolapse - who knows how that would end after a vigorous jive?

We avoid the annual Christmas family sleepover because we don’t want others to see the day to day, minute by minute reality of our ever-diminishing physical abilities.

Shame drives us to disconnect from those that love us the most and wish to help. We put up walls rather than ask for help because the world we have lived in has always accommodated our abilities and now that it doesn’t we don’t know how to make it work for us.

As part of my ableist attitude while adjusting to my new style of being I gravely considered telling people that I was recovering from a broken femur when I started using a walking stick. Seriously. But I decided to come clean and not only embrace my condition but be very frank with all and sundry in the name of education and understanding. I also realised that I am an atrocious storyteller and anyway, why would a permanent disability be any more shameful, embarrassing or unacceptable than a temporary one?

I still catch myself being my own worse enemy. My own ableist prejudice rising up against me – less frequently now but often enough. Comments like “when I was normal”. This gives me a chance to let others know that I would be capable and willing as I was once upon a time. Sure there is a sense of grieving in this thinking but it really only serves to embed the attitude that being able-bodied is the only way to live fully or happily. That disability is the fly in the ointment of life and must be eradicated or at best tolerated.

I still apologise for taking up more space or feeling in the way. I do have a wider turning circle than in the past and am trying super hard not to be self-conscious of my physicality. But while I am apologetic, I and my companions will never fully embrace the presence of all of us in our many forms.

More recently I have had the opportunity through a volunteer role on our local council’s Disability Advisory Committee to have dinner with the other board members. I am very nervous about displaying my lack of ability to cut my own food and the need to bring my mouth to my hand as my arms have lost their upward motion. Depending on the height of the table and which wheelchair I am using I can completely forget soup. Rather than the former instinctive self-talk of not being worthy to attend and it’s all too embarrassing,  I need to remain my own advocate. After all, disability acceptance is not only why I am writing this blog but why I am fortunate to be part of such a committee. I could bring a carer with me of course but I also know that when I ask for help I will get it from these strangers,  soon to become associates and maybe friends.

We owe it to ourselves and everyone around us to be open about what’s happening with us. To accept and embrace what we can achieve. What we can give to others around us. What joy and beauty we find in our days in any form, be it a hug received, a sunset watched, a chat with a friend, a good book finished, a great joke, a delicious sandwich, the sound of life around you. Some days that’s hard to do but worth the effort.

The less ableist and the more loving we are to ourselves the more inclusive and accepting our whole community will be.