Back in January 2013, I wrote a piece about Marie Fleming. Since then, Marie has died peacefully. Since then Gail O’Rourke was acquitted of helping a friend travel to Switzerland in order to end their life. Where do I stand?

In the piece below I made a distinction between illness and disability. I stand over it. Let me explain. As I write this, I am in the rudest of health. I have a job I love. A social life which does me fine. I enjoy life. I intend to enjoy life for a long time to come. That is a given. If, on the other hand, a serious illness entered my life and questions of quality of life popped up more and more, what would I do?

It is something we do not think about but I think hospice care would be my first choice. The choice of hospice care would hopefully mean I was still in control of life’s choice. Entering the hospice would signal a beginning and an end. I would know life would be ending but, as with the rest of my life, I would be in control.

It would have nothing to do with my disability. My life would have been lived. The time to say goodbye would be near.

Illness would be upon me. If it was not going to be controlled or defeated, my quality of life must take precedence.

I hear voices asking: What if others saw disability as an excuse to question my quality of life? Again in the article below, I drew attention to the wider issue of how disability is seen. Yes, I used the RSA ads and I stand over what I said. A car accident is just that. An accident. We move on. We reshape it as a life experience and move on. Life still has to be lived.

When I was looking towards a possible end game, I was picturing a life-ending condition. My life would have been played to the fullest. It would be time to say goodbye. Under those circumstances, it’s only fair that I would have a say in what happens.

There you go. Here is the original article:

I don’t know Marie Fleming. I don’t know if I could be as stoic and as clear-minded if I was faced with the choices she and her partner have had to face and will face in the future.

I would suspect these are the types of things most ‘normal’ Irish people feel. If push comes to shove, we would see the complete merit in her case. None of us would want that.

I would go along with all these sentiments and yet there is something that marks my reaction as being slightly different to the general population. I was born with a disability. My experiences have all been mediated through my experience of disability. On the whole it has been an incredibly enriching and positive experience. Would I have had the same experiences and joys if fate had decided to shove me down the ‘normal’ route? Who knows. And it’s not worth thinking of. We are where we are as somebody once said.

So, what’s exactly different about my reaction to Marie? Would I do the same? If I was that ill? Quite possibly. Illness needs to be cured or brought to an end in a way that comforts the individual. That, to me, is a given. Marie has a crippling illness.

What really irks me are some of the assumptions society heaps on people who acquire a disability later in life. The chief culprit in peddling these assumptions is the RSA. This is where my blood begins to boil. You’re in a horrible car crash but there may be a fate worse than death… Yes, you may well end up in a chair and may even have a slurry voice.

If I was a young driver who had been in a serious road accident, these assumptions would hinder any hope of adjusting to the new situation.

On a deeper level, the RSA is subtly peddling the idea that disability is something lesser. Abandon hope all who enter here. This dismisses my life and experiences. It also devalues the lives of people who have acquired disabilities and have found new opportunities in their lives.

I hope you can understand the delicate line I’m treading. I have 100 percent belief that Marie Fleming has a right to any treatment she needs. She is ill. Her decisions should not affect how we view disability whenever it occurs.