During the period leading up to Easter, Christians around the world are encouraged to reflect on “suffering”. In the light of this, I wish to share my thoughts and reflections on the subject of suffering and, hopefully, provide readers with some food for thought without causing them to have indigestion. Joking apart, I write this piece with a degree of caution and hesitation, due to the fact that, as a disabled person, my life is often portrayed as consisting primarily of pain and suffering. I will argue that this view is a misconception of our lives as people with impairments and is, in effect, the real cause of our suffering.
Before writing this article, I asked myself why people assume that, because I have a visual and a physical impairment, my life is a tragic one, characterised by pain and suffering. While I admit that there have been times when I have felt intense pain and my life has felt so pointless and unbearable, I would not wish to define myself solely in those terms. Indeed, I have learned to live with my impairments to the extent that they have become an intrinsic part of who I am and part of my daily experience. I do not consider my life to be dominated by pain or suffering. At least, my experience of suffering is not extraordinary and, as I see it, such suffering is part of a common human experience.
At this point, it is important to say that up to now I have been talking about the suffering caused by physical pain. Unfortunately, society cannot legislate or take other measures to end these moments when, yes, we are in pain, except perhaps to ensure that people who may be in that situation have access to proper medical and palliative care and support. Having said that, even if physical pain is a characteristic of certain (and definitely not all) impairments and medical conditions, it does not define us as people. In this sense, we are not “sufferers”, we are not “afflicted” by our impairment and we certainly do not have “special needs”. Indeed, who we are extends beyond our impairments. At the same time, our impairments are also part of who we are and if we want true inclusion, we must acknowledge that we may have physical, sensory, intellectual or psychological impairments but our needs remain the same as those of other members of society.
In this sense, the only difference is that we fulfil those needs by different means. In my case, I use a wheelchair to travel around and a screen reader to access information. A deaf person may use Maltese Sign Language (MSL) to communicate, a person with an intellectual impairment may require information in an easy-to-read format, but the need is to understand that information. People with mental health issues might require support and, in some cases, medical treatment, but we all have the need to belong. However, in all cases, the needs I have listed here are common to each of us. In this sense, our impairments are not the main cause of our “suffering”. Rather, it is often society that creates conditions when we are made to suffer.
Granted, our impairments may cause their particular problems, but the real cause of our suffering is our disability. Here, it is crucial for me to make an important distinction between impairment and disability. On the one hand, impairment is related to the ascribed functional limitations of the mind or body while, on the other, disability is caused by society being organised in such a way that it takes little or no account of our impairments. In the case of the former, society can do little but, in the case of disability, society can do a lot.
I must say that Malta has made considerable progress in terms of ensuring disabled people have equal opportunities in society. Indeed, the Equal Opportunities Act (2000) is one of the most comprehensive examples of disability anti-discrimination legislation in the world. I note progress in the field of education, employment, physical access, access to information communication technology (ICT). Perhaps access to public transport is the most recent development. It would be naïve of me to say that there are no more problems. But we need to give credit to all those who are making inclusion a reality and reducing the barriers giving rise to our disability.
Here I return to the subject of suffering and disability. In this article, I have argued that the real cause of our suffering as disabled people is not our impairments but rather the result of society failing to acknowledge that, with all our differences, we are part of the community. At the same time, as a society we need to ensure that we do not exclude disabled people from being part of society simply because we fail to relate to people with impairments as whole human beings.
We are made to “suffer” when society forgets we exist or when we are misunderstood and misjudged simply because we happen to be different. Indeed, this is, I feel, our real suffering – and it is a form of suffering that all of us can reduce if we work together as disabled and non-disabled people. However, if we really want an inclusive society, we are the ones who must start the change!