Shaping our services and delivering them in a way that supports consumers having ‘Choice and Control’ is a key driver for our organisation. At our recent Staff Development Breakfast, we were privileged to have three consumers share their personal stories of living with or caring for someone with disability including their current experience of accessing services and what this new concept means for them. Read the presentation below from Sandra Manessis around her experience of living with MS and her hopes for Consumer Directed Care.

I had just had a baby daughter. I already had 2 young stepchildren and then, a diagnosis of Multiple Sclerosis. I was too busy, and too numb to deal with what having MS meant. I plunged headlong into denial, and being asymptomatic for 10 years or so, I stayed there fairly comfortably. Denial protects from pain.

Fortunately, the shift from independent to dependent, from able-bodied to disabled, has been a slow one for me. Mercifully, in some ways, I have adjusted fairly easily, without great mindfulness of the need to do so. At other times painfully. Learning to drive a car with my hands after 30 years, when driving with my legs became too difficult, took mental effort, self-belief and perseverance.

Some adjustments don’t get easier with time. Plotting out an itinerary to minimize walking, feeling fearful before going somewhere new, where my limitations and restrictions are tested and on show. Sitting in a wheelchair, which is in and of itself uncomfortable and at times, shaming. Feeling physically insecure and often, vulnerable.

Dealing with the ignorance of others is the most painful. I have walked hesitantly through a crowded café, people’s blank eyes noting my progress, one or two sympathetic glances but mostly I experience averted eyes. If I am using a wheelchair, at times I encounter communication that defers to whoever is pushing me, as though I am assumed to be mentally challenged as a matter of course. Being pushed in a wheelchair always makes me feel like I’m being ‘pushed around’. No-one can ever move you exactly where you’d like to go, if you could do it by yourself. People trying to help, sometimes move you without asking, assuming that you would be better off in this or that position. People tend to orient themselves in the space between us in a way that my neck uncomfortably cranes to see them. I feel at times a confusing mix of gratitude and resentment. I have become better at asking for what I need or want, asserting myself, not reacting with irritation at having to state what to me is obvious. I try to do this with grace, and only sometimes achieve it. Acts of kindness, when they come, and they do, are glorious. It makes me feel restored to the human community.

Those of us who are disabled experience the shame that comes with loss. Loss is experienced when one’s interest or enjoyment in something, some activity or some person, cannot continue in the future or in the same way and will not have the same type of support in the field. In the event of loss, shame will naturally be internally triggered, helping us to pull back from our continuing desire to participate in the field in the same manner.

I am aware of how shame has limited how I have been in relationship with myself, and with others. The most notable way in which I have done this has been in my initial reluctance to use a wheelchair to facilitate my getting around. I would rather walk with crutches or limit where I went, and I had a notion that if I were to sit in a wheelchair, I needed to pay particular attention to my appearance. I couldn’t just be “myself”. I had to somehow make up for and be ‘more than’ because of my disability. I remember that I would feel diminished and would lose the strength of my voice.

I have heard that people working in the disability field were once told that those with a disability have more in common with their non-disabled peers than with each other. I wonder at times where this message has gone. It also brings to mind a related ability, of placing oneself in the shoes of another. A comment of a respected and experienced allied health professional who had worked with neurology patients for decades stayed with me for a long time. She told me that she had read an article giving the perspective of some-one who suffered from Muscular Dystrophy, who was continually aware of the possibility of falling. It was news to her, to see the world through the eyes of another. This exchange both surprised and saddened me, that even a professional surrounded by others with a disability, had not thought to consider their internal experience, let alone to ask them.

I was not always disabled, and I know what it is like to be able bodied. I remember. In dreams, I walk free. Having Multiple Sclerosis has changed my life irrevocably. Where I go and what I do when I have spare time, how much I can work, what I can do to manage my life independently and what I can’t, my sense of self and how I perceive that I am viewed by others. But at core, I remain fundamentally the same.

When my ability to walk first began to change, I was forced to a least begin to contemplate the impact of this illness on my life and to give consideration to the aids that would benefit me. Being an independent and intensely private person, I found what was required alone, even if what I chose wasn’t always optimal. The way in which I have accessed services over the years has continued to be piecemeal. Perhaps due in part to where I am up to personally in terms of my level of acceptance of my disability and the impact on my ability to manage independently. Perhaps partly because of the service delivery.

There are those who have treated me like a patient. I have felt patronised, even if it wasn’t their intention, as though I were assumed to be sick or incapable of advocating on my own behalf. And then there have been others who have met me, who have been curious and interested to know who I am and where I am up to, to engage in dialogue with me respectfully, who consider alternatives with humour and warmth. In other words, they treat me like a human being.

I hope that consumer directed care means that I will be given greater control over making decisions and choices about my lifestyle and wellbeing and that I will be supported in this process respectfully. I will need information about what is available, with clear lines of authority and access so I know who to contact, how to, and when. And above all, I need to be met openly by those I will encounter along the way, in this journey that is at times difficult.

Sandra Manessis