CRUcial Times Issue 22 - Feature Article

WHY THE COMMUNITY NEEDS PEOPLE WITH DISABILITIES:
An exploration of some assumptions

We asked Lorraine Zeni why communities need people with disabilities. What follows is deeply thoughtful and thought-provoking. Lorraine lives in Brisbane with her family and is well known to the South Australian community, where she lived until recently.

In thinking about the question, Why communities need people with disabilities, it seems to me that there are a number of inherent assumptions in the question: assumptions about the notion of need; the nature of community; and the identification of ‘people with disability’ as some form of homogeneous group. When I reframed the question to consider how the community stands to gain from the presence of a diverse array of people with different qualities, needs, and abilities I also started to ponder a range of other issues including the cost to some people with disability. So I would like to share some of my thoughts with readers, being very clear that this is by no means more than the beginnings of a much broader discussion.

The dictionary defines ‘need’ as something we must have, something we cannot do without, like food and water - something we must have to survive. Do we need people with disability in our communities in order to survive? Can community, can we, survive without people with disability? There are many people who would be thinking, "Yes, of course we need people with disability". At the same time, I am conscious that there are those who would be unconvinced for an array of reasons.

When I think about this question in relation to my daughter, I wonder what it is that she brings to her local community that it actually needs, and why it needs it. Can the local community get by without her presence? Does she bring anything in particular that the community needs; needs that the community cannot meet in some other way given the diversity that is community?

Then I wonder whether the ‘need’ is a need at all. Is it more about a benefit, or an opportunity or potential; is it more a question of what we stand to gain? It seemed to me in considering these questions and numerous others that arose, that one of the assumptions underlying this question of why the community needs people with disability is the notion of a ‘grand plan’ where everyone is meant to be how they are, including people with disability, and where there is reason and purpose in everything that happens, to the extent that no community is complete or whole or can become what it can be, without all of its parts. Further, in this grand plan there is a certain and specific composition in the diversity of society that is typical, desirable and indeed essential, and society cannot function well, or even at all, if some of its members are missing.

I actually like this notion myself but the more I thought about it, the more uncomfortable I became, because while all of the things that people with disability bring to a community have the potential to be enriching experiences for the other individuals in that community, eliciting qualities of compassion, understanding, giving and receiving, presenting opportunities for relationship which, in turn, extend outwards and benefit the community as a whole, I’m not convinced that the community actually needs people with disability in particular, amongst the diversity of people in a given community, in order to experience any of the things that may come from their presence. Further, the more I pursued this notion, the less comfortable I felt talking about people with disability as some kind of homogeneous group, as if someone with a cognitive disability brings the same needs, experiences, or offerings as someone who uses a wheelchair - maybe they do, and maybe they don’t. For the purposes of this paper I haven’t resolved this issue. That is another discussion, I think.

If we take the view that one of the things that people with disabilities have in common is that of being devalued by the community at large, does this not encompass other groups of people who may not have a disability, such as people who are homeless, or people who are addicted to drugs? If we are saying that the community needs people with disability, are we also saying that communities need people who are homeless or drug-addicted too? What are we saying here? After all, doesn’t the presence in the community of people who are homeless and people who have a drug addiction, present members of that community with opportunities to respond with understanding and compassion, and offer opportunities for relationships and challenging and enriching experiences? Are we saying that the community can only achieve enrichment and the qualities of acceptance and tolerance through the presence of people with a disability in particular, given the diversity of community? I’m not convinced.

I believe that the focus we have on the positive attributes of our sons, daughters, friends, neighbours and other people with disability, and on the potential of their lives, is the most constructive perspective. My experience tells me that not everyone in the community shares this view or may be ready and willing to engage with, to learn from, to contribute to, and thereby gain from the presence of people with disability in the community and in their lives. I know that if I have a person with a disability as a neighbour, or sitting beside me on the train, or shopping at the local shopping center, I am offered opportunities to engage, and to gain from what is possible in such engagements. But will everyone in the community take these opportunities and does it matter whether all of the other people in the community are willing to engage and gain from such opportunities?

I don’t intend to try to answer these questions but as I pondered them, I reflected on what they meant for my daughter. She is soon to turn twenty, and I have pursued her place in her local community with great vigor and determination for all of those years and I will continue to do so as long as I am here. Over the years, I have seen some individuals enjoy and gain from their engagement with her, and their experience of her. At the same time I have seen others step back from her, retreating from her and rejecting her, resentful and angry that she is in their space.

As I think about her years of schooling, when she attended local primary and secondary schools, I would like to be able to say that those schools benefited, were changed for the better by her presence, and that they needed her attendance and participation for that change and growth to occur. I would like to be able to say that they enjoyed knowing her, and that they valued what she brought and contributed to the school communities. But one of my prevailing memories comes from the end of her high school years, when I found myself sitting in a meeting with all of her teachers. As I sat and listened to her math teacher telling me that my daughter was an awful person, that he could find nothing about her of any worth, that her presence in the school was a waste of his time and energy, that she took valuable learning time away from the other students, I realized that their view of her had remained static. No one at that meeting, not the Principal, none of the other teachers, not even the special education support person, questioned or challenged what this math teacher said, and no one spoke up to offer a different view.

I believe there was a lot for the teachers and the school to gain from my daughter’s presence, and I know that some did develop new understandings, and did gain. But I’m not sure that those few teachers who did change their views were able to sustain their efforts (or indeed if it mattered that much to them) to do things differently after my daughter left the school, or whether they were overwhelmed by the dominant culture that was indifferent or antagonistic towards my daughter’s presence. Accordingly I’m not sure that they needed her there. Certainly, the hatred (a strong word I know, but I have no other word that will suffice to describe the response) that my daughter’s presence elicited from a group of adults who were entrusted with the education and care of all of the students in the school, would strongly suggest that they really did, in fact, need her there, to confront and offer them an opportunity to change their hostile and hurtful views.

However the flip side of this is the cost to my daughter. For all of the relationships, learning and growth that could have occurred in my daughter’s high school years, what we saw was her hurt, rejection, and damage done to her that resulted in anger and enormous frustration on her part. She could have shown them that aside from having an intellectual disability she is a person of considerable abilities and strengths; she has an enormously creative and strategic mind, and the capacity to problem-solve and orchestrate some situations in very sophisticated and lateral ways; she has lived through enormous loss and grief with the death of her brother, the central figure in her life, her greatest friend, teacher and ally, and as a result she has developed a capacity for compassion and understanding of another’s pain when she has the opportunity to show this aspect of herself. She can be very single-minded - an attitude which can bear positive fruit for her at times, but which at other times, can also be to her detriment. She is a generous and thoughtful person and she has a remarkable memory for facts that didn’t seem to have any application within the school curriculum. All of these qualities could have been nurtured through her education, but they were not even recognised, let alone approached in a positive manner, by the school.

Did this failure by the school community to recognise my daughter’s capacity to contribute in her own way extend to the community in general? In my experience, while there have been a few individuals who have sought to know, to understand, and to enjoy who my daughter is, her experience of the majority of the community during her childhood and adolescence ranged from indifference and intolerance to outright antagonism. We can talk about my daughter’s presence and the presence of others with disability as a way in which communities can gain through diversity and richness, but we should also recognize that there are potential costs for at least some individuals with disability through the pain of rejection and other profoundly hurtful experiences. And what about those people who do not have families or allies around them to help them seek and shape their place in their community?

For those of us who share the view that my daughter, and other people with disability, must have their place in their communities, we can talk about the value that someone like my daughter has to her local community as well as talking about the value that her place in community has to her. And we can see the many ways in which we can all learn and grow and develop as we all go about our lives. But are we saying that the community needs people with disability so that we can learn, be enriched, develop compassion and understanding, so that we can become more, so that we can gain? This surely implies that the purpose of people with disability, within the grand plan, is to meet our need.

In my view there is not an ‘other’ place for my daughter, or for any person with disability, but in and of, the community. I do not regret the decision I made in pursuing my daughter’s place in community, and would pursue the same pathway knowing what I know now. I never expected it to be easy, and while I am clear that the hurts and costs to her of not pursuing my vision for her life would have been much, much greater, I still recognize that the costs to her have been significant and, as for any of us, have helped to shape who she is today.

I am aware that a number of things I have said may not sit easily with some people. This was the journey I took and it raised these questions and issues for me, so I am sharing them. I also felt that, when faced with a question like why the community needs people with disability, there is a tendency to focus on what we believe and what we dream for our family members, our friends. Also, we can tend to keep the extent of the pain of the cost to our familily member or friend hidden, lest we might somehow be misunderstood or not seen as true to ‘the cause’. I think we run the risk of romanticising the issues and sometimes I wonder if we even contribute, in some ways, to the notion of the burden of ‘otherness’ that people with disability have to carry. I have sought to step back from this and what has emerged is a questioning of some of the assumptions. What are we really saying and what do we really mean when we talk about needing people with disability in our communities? What are we saying about each individual’s purpose for being, and about each individual’s unique humanness, and the place we hold in community just because we are here?