by Paul Edwards
This article is the first in what I hope will be a series that will consciously explore some elements of the society in which we live. These elements are not chosen randomly but, instead, represent areas where I think we, as people with disabilities, ought to be able to impact the way we are treated. This first article will try to set the stage for what follows and will set out some of the assumptions and circumstances that have led me to dare to propose to take up an inordinate amount of space in the Forum for the next several months.
I want to start by providing you with a peek into the series of events and experiences that have led me to set out on this journey of exploration. First and foremost, I have been reading a lot about disability lately. I suppose there is nothing particularly earthshaking about this, but I would urge all of you to conduct more literary exploration of the increasingly large and diverse literature concerning people with disabilities. It includes, all too often, the frankly "commercial" and sensational wonder stories of those amazingly courageous and inspiring people who have, through the exercise of bravery, fortitude, determination and faith, managed to "overcome" their overwhelming burden of "handicap" to become "real" people. But it also includes thoughtful exposition of the events that have shaped disability history and angry diatribes aimed at an unthinking, corrupt society which has, perhaps unwittingly, erected attitudinal barriers that effectively cancel all the gains that disability legislation has created. I have also been reading books about the civil rights movement and the emergence of feminism which have reinforced my belief that the disability rights movement has a lot in common with the struggles of other minorities for liberation and identity.
All of this reading has been done against a sociopolitical backdrop that is increasingly dark and sinister for all minorities and, most assuredly, for people with disabilities. Everywhere the rights of people with disabilities are being narrowed by court decisions, by legislatures and by the media.
What is happening today differs very little from what happened in the decade after the passage of Section 504 of the Rehab Act. I began to ask myself why history is repeating itself. Is there something inherently threatening about disability rights that causes society to appear to take one step forward and two steps back in a sinister dance toward and away from the brink of empowerment? Certainly there are lots of commonalities between the two historical periods. We moved from a Democratic to a Republican administration in both periods. Both Republican administrations spouted rhetoric about the need for less federal government and, indeed, less government period. Their actual performance, ironically, has ended up resulting in dramatic increases in the federal deficit during the Reagan and the second Bush administrations. While the reordering of society following the 11th of September 2001 has certainly continued the marginalization of disability issues, I think that the handwriting was on the wall long before the World Trade Center was attacked. So I don't believe that we can point to terrorism as a seminal cause of disability rights erosion.
Civil rights for other minorities are clearly a work in progress and there are clear signs of erosion there, too. Challenges that have virtually destroyed affirmative action as a viable policy, pending court decisions that may undermine affirmative selection of racial minorities into post-secondary institutions, and many other trends all point to a rethinking by society at large about its obligation to alter the playing field for those recognized as victims of discrimination based on societal imbalance. That conclusion led me to thinking about various institutions within our society and how each of them has responded to the broader issue of civil rights and to the narrower question of disability rights. It is clear that a society as a whole will not alter its attitudes if a majority of its institutions remain intransigently opposed to the changes being espoused. The more I thought about those institutions, the more it seemed clear to me that they remained barriers to change. Why was this true?, I wondered. Surely at least some institutions ought to be open by their very nature to making things better for all their members! Wouldn't this be true of religions? Wouldn't it be true for trade unions? And what about the family? Surely parents would want equality for their disabled children.
When I began to look at each of these institutions and the role each plays, I became convinced that each one may have made some halting and token steps toward inclusion, but, as a whole, none of them has embraced disability rights as a part of their ongoing agenda of social change. Nor have advocacy organizations who speak for other minority communities such as the NAACP, NOW, or virtually any organization in the gay community been very open to welcoming people with disabilities and their specific issues onto their action agendas.
In the next several articles, then, I want to put these institutions and people with disabilities under a microscope to see in more detail what they have actually done, what they have failed to do and why, and what individuals with disabilities or organizations of those folks might be able to do to change that. So there is no misunderstanding right up front, it is certainly my thesis that the fault for the failure of institutions to embrace disability rights is partly to be laid at the door of disabled people themselves who have focused on pushing for tangible alterations to physical or programmatic access rather than on impacting the core values of these institutions.
In religion, for instance, there is a long history of involvement with making things better for people with disabilities: a history that goes back as far as the New Testament at least. But what does "help" mean? Is there a theology of disability that could be proposed that might better inculcate into religious community a philosophy of inclusion that goes beyond ramps and braille? Obviously I think that such an animal exists. You will all be glad to know that it is not my intention to outline the whole theology but rather to suggest a few of its more basic tenets. I am more interested in exploring how each of us can and must work to impact those institutions with which we are involved. Future articles will try to provide practical suggestions about what each of us can do.
There are a few other assumptions that I have made which I want to share before ending this first article. I have assumed and firmly believe that we can make a difference to each of the institutions that I will discuss. I truly consider that all of the institutions I want to talk about are, to some degree, open to influence by us. I also believe that it has become clear that we can only accomplish relatively limited objectives by trying to impact government or the media because they are, after all, where societal consensus becomes opinions and laws. That consensus is also built, however, from the other institutions in our country and I have not seen very much in what I have read that focuses on the desirability of our beginning to alter society's values by actively intervening with various institutions. I also believe that the specific institutions I will look at can be changed. Indeed, I believe that some of them, if not all of them, are imbued with value systems that favor our issues. We have not consciously sought very hard to create institutional change and we should.
My last assumption and perhaps the most significant of all is that institutions will only change if we change and embrace an identity that will allow us to honestly and enthusiastically advocate for institutional change. I have said before and will repeat again that people with disabilities are their own worst enemies because they are not prepared to ask for very much and are too often content to accept even less. If full inclusion is our objective, it isn't enough to ask to get in the door! If we want our society to truly value all its citizens, we must work with all the institutions with which we come in contact to build a different way of seeing disability. It is all about expectations. Institutions must expect and receive more from us and we must expect to receive and to give more to them. Ultimately, the objective of this series is realistically not to change our institutions either immediately or fundamentally. While that would be nice, it is probably not going to happen. Instead what I expect to accomplish is to provide some of the approaches that can be used to raise the bar with each institution I discuss. The process I propose starts with us thinking about each of these institutions in different ways and ends with these institutions seeing us and themselves differently. It's a large task but I think we can do it. At the very least, let's explore together what I think the values of these institutions are and how they can be altered! Stay tuned, it should be fun!