True Disability Acceptance-is it possible?

An experienced wheelchair retailer once told me he believed the older you acquire your disability, the more difficult it is for you to accept the changes that come with it.

  I was being fitted for my first manual wheelchair at the time. After 50 years of unassisted movement and ability, I saw buying my new wheels as a pragmatic choice, thinking of my safety, the convenience of those around me and my quality of life; but looking back now, I was not in touch with my true emotions and was harbouring a generous amount of resentment and sadness towards my situation.

We could call it denial, which seems counterproductive to the practical act of purchasing my first wheelchair. But practicality allows me to focus on what can be done to overcome a challenging situation, whereas true emotional acceptance is much more difficult to achieve, if at all attainable.  My first wheelchair fitting was back in 2015. Only this year have I jumped that huge chasm of emotional, social, physical and functional change and am mostly, finally happy with my altered material roles, as being defined by my disability.

Let me explain what I mean by material, informed with a twist on my very basic understanding of sociology. In my view we all have material or physical roles that we play. These are designated by circumstances such as the society, culture and family we are born into, as well as conscious decisions we individually make. My material goals were unashamedly bog-standard and domestic: to raise happy, contributing humans; to support and be supported by a pretty fabulous guy, and to exchange with and provide for my family and my friends. I have been privileged and blessed to have lived these goals, but I only ever saw them as achievable through physical input. Baking, catering, being designated driver for family and friends (except when it was a girls’ event, of course), the basic household chores, part-time work, planting, decorating and sewing all added to what I perceived as my identity, and I was mostly happy with that. 

However, the perpetual unravelling of my physical function and extenuating related medical challenges over the last fifteen years combined with an uncertain future has made for some heavy introspection. Through discussion and reading, I’ve concluded that my worth, just like yours, is not solely based on the functional aspects of life, but the part of you that makes you want to perform those roles. The intangible, non-material (as different from immaterial, that bears no relevance), untouchable part of your inner makeup that makes you a giver or a taker, that makes you aware or not of various forms of beauty, that inspires you to be a better or unchanged you and gives loads of other characteristics unique to you.

In other words, our value is in being.

In my opinion, the privilege of being incurs an obligation to make our small part of the world a little better, happier and healthier in whichever way you can. It might sound trite, but this may be in greeting a stranger with a smile, allowing someone to help you, being a confidante or sounding board or letting others in and being vulnerable when you’re feeling low. 

I have now acknowledged and accepted that my life-changing disability is part of me and therefore must define my interactions with the world. Through an extraordinary lucky call of fate, I get to live with the choices and entitlements afforded a white woman raised in a technologically and economically rich society and have always had the privilege of being free from trauma and surrounded by love and financial security. The future I had planned is similar in all the fundamental ways to the one I now face because I have the means to access treatment, personal and technological support and, even more importantly, Gaz’s loving and loyal care.

I might not be spontaneously popping away for a weekend or bathing my granddaughter or be completely pain-free. I receive, rather than give physical cuddles, yet I steadfastly cherish those I love in a projected heartfelt hug. Nor will I be baking a birthday cake or helping those close to me move house or redecorate my own (specific as the latter two seem, I get a kick out of this stuff). But I’ve become part of an admirable, exceptional, and talented network of people living and working within many marginalised sections of society from whom I have learnt an incredible amount regarding attitudes, privilege, responsibility to each other and our land, and so much more.

I have discovered that I haven’t had to change my roles at all; my being, or self, is the same as it ever was. Instead, I have been forced to redefine existing roles and expand my skill set as a woman with a disability. I’m not moving the couch anytime soon, but my newly muscled management skills will get that job done.

Above all else, I think I’ve shaped an additional purpose to my life; far from denying my adult-onset disability, I am considerably grateful to Limb-Girdle Muscular Dystrophy for the genuine life teaching it is giving. Resentment, along with sadness and frustration still comes in bursts. After all, I am a human with continuously, and unpredictably limiting physical impairments and comorbidities. But whereas I begrudged the loss of such autonomous activities as welcoming people with preparations `performed by Leanne’, and home visits to others, I now feel the sense of loss somewhat less.

My appreciation meter is way past the full indicator as I’m discovering the true goodness of humanity first-hand. I am grateful for the opportunity to try to understand and unravel the prejudice, bigotry and ignorance shown towards around 20 per cent of our population – the disability community – while gaining insight into my own rare neuromuscular condition. And as I try to make sense of attitudes and actions and science; my new role will be to pay it forward and spread these snippets to my little part of the world. A world that encompasses the disabled and non-disabled alike.

Inclusively yours,