Thinking about what is possible
An address by Lorna Sullivan to the ImagineBetter Conference 2011
My brief this afternoon is to do some thinking about what might be possible in the lives of people with Disabilities.
It is interesting at times like this to give consideration to those assumptions and stereotypes we have already over come before turning our attention to the many assumptions and stereotypes we are still left with that stand as challenges to our children attaining a good life.
It was 35 years ago when I first found myself confronting these issues. That was a time when young people with an intellectual disability were still being sent into institutions as little children, where access to education wan not considered feasible, where outside of an institution the living options available were large IHC hostels, or a life at home in perpetuity.
How fortunate we are that at this period in our history there were families who were not prepared to believe that this was as good as it gets, and that there were those who dared to imagine better for the lives of disabled people.
It is highly unlikely however that I will be privileged to bear witness to the extent of change that will take place over the next 35 years. That will be your time. That is, the legacy that you, your children and your allies are laying down. What I do believe, however, is that if you have the same courage and determination as those families that have gone before you to continue to imagine better the young people of today will continue to outstrip what you could ever have hoped for.
“We live at a time when there is much emphasis on seeing people with a disability as being people just like everyone else. This is a most welcome development, as people with a disability have suffered greatly in not being seen as fully human, and not being treated as unique and interesting individuals in their own right. All of the attention has seemingly gone to endlessly evaluating what people are not, what people can not do or become, rather than unleashing the hope and potential in people’s lives. It is almost always true that people will tend to underestimate, rather than overestimate, what could be possible in life for people with a disability.
A key factor in much of this is the extent to which most of us are limited by what we have not yet seen or experienced. Our beliefs about what is actually practical, and reasonable tend to be things which are already part of our life, what we already know and are familiar with, rather than options which are as yet untried or unfamiliar. So, what we consider to be “realistic” is most often more of what we already have, more of what has already happened rather than what has not yet happened, or may yet be possible. In many cases, we may be deeply skeptical of what is new simply because the old is so comfortable, even if it is not all that satisfying.” (M.J. Kendrick)
The lives of people living with disabilities are often not lived to their potential. Not because of any personal limitations that the individual may have but because, those of us responsible for the promotion and development of what might be possible in their lives are ourselves beset with fears, with anxieties and with stereotypes and have limited vision of the potential that disabled people have for a full and purposeful life.
We as parents, as families, educators and professionals foreclose too early on the possibilities and as a result the people we love and care for have very little choice but to themselves settle for, or conform with, our own limited expectations.
Despite this however, the lives of people living with Disabilities are better in the year 2010 that ever in human history, and we have not reached this situation by accident. Such change happens when people realise that the lives of disabled people have become stuck. Generally they have become stuck within the very systems designed to support them to grow, learn and develop. It is only when we come to realise that more is possible, that the life opportunities being offered to disabled people are not good enough that we are compelled to imagine better and to move towards what is possible.
As Helen Keller said
“It is a terrible thing to see but to have no vision.”
‘If today’s “reality” is not really meeting the needs of people with disabilities, then it is logical that we should question today’s “reality” as it is obviously not a reality that is helping. The question that then forms is “what might possibly be better than we have today?” When we take the step of wondering what might be better, we start becoming practical problem solvers. By not being married to what there is in life now, but rather by looking past today’s reality to what ought to be there for people, we become engaged in the creation of new possibilities.’ (M.J. Kendrick)
To have vision then is to have a picture of what is perceived as being possible in life. The process of vision building helps us to broaden our sense of what is possible. To improve vision you really need to imagine it, to picture it. Imagining better is the beginning of finding better in the lives of people. To imagine better requires that we change the stereotypes and assumptions that have surrounded the lives of people with disabilities. That we place our focus on the competencies and abilities that people have rather than placing our emphasis on the struggles and challenges. Just imagine, if instead of presuming incompetence we were always to presume competence in people. By presuming competence and providing supports, encouragement and opportunities for people to demonstrate what they are capable of, we create different expectations within themselves about what they are capable of doing and being, and create different expectations in others about what might be possible for their lives. After all people will live up to the expectations that others hold of them, if you hold low or no expectations then don’t be surprised that people will live up to that. Imagine your own life if you no one had any expectations of you. By holding few expectations we deny people the opportunity to take up those roles that not only enable them to demonstrate their competencies but also provide them the bridge to relationships and real participation in the valued fabric of social life.Once you can imagine a life that is better, a future that is possible, this future then becomes much more attainable if that vision is shared with others. In sharing your hopes and dreams for the life of your son or daughter you will find the allies you need to stand with you in the pursuit of that life. Having a deep belief in what is possible and pursuing it is a bit like being on a diet. If you tell no-one, then it is really easy to go have that muffin with your morning tea, after all no-one knows and you can easily fool yourself. However if you have told people then there will be at least some one who will be watching and let you know that you are being watched. It becomes much harder then to fool yourself or to abandon your objective.
Testing the vision
Once you have a vision of a better future the next step is the testing of the vision. This is a very important step as better futures do not come to us fully formed. Dreams do not usually emerge as polished versions of what they might in time become. What is possible generally begins in the rough and requires a great deal of polishing and refinement over time, sometimes years, before it is perfected.
Take the development of the cell phone for example. Those of you who as old as me will remember Maxwell Smart and the extreme novelty of the shoe phone. This was the first kind of dreaming, if you like, of the cell phone. Then we progressed to those large bricks that required a small case to carry then around, through to what we have to day with people walking down the street talking to themselves with no apparent equipment attached. Thus something started in the rough becomes more and more refined and sophisticated as we get clearer about what it is we are seeking. Engage more people in assisting with its design and continuing to pursue every idea, path and opportunity that takes us towards this end, and reject every idea, path and pressure that takes you away from this end.
However, the opposite of course can also be true. If we are not clear, or do not struggle to become clear about what could be possible, if we hold no vision or a very weak vision, then it is very easy for us to be driven this way and that depending on what is happening at the time, who is advising us and our energy for engaging in the challenges. That is, if you stand for nothing, you will fall for anything.
It is the hopes and dreams of people then that are the substance of getting us to better. From these will come the practical things that will solve the problems of attaining better, never the other way around. If you can only imagine better once everything is in place, e.g. the funding, the supports, the building, then you are already trapped into the solutions before you have the deep sense of what it is that you are wanting to achieve, what it is that might be possible. It is dreaming and vision building that is always at the bases of problem solving. The dreaming is the thought process that enables us to find a different way of solving the problem. Indeed the reason that we have already come so far is because there have been people, most often parents, who have refused to accept reality as it is, or as it is presented to us.
So you can see that holding onto a vision is not a trivial act. If your vision passes the test you will have a powerful tool that will change lives. Dreams are part of keeping hope alive, and we must never let hope for what could be better die. Indeed hope is more important and powerful than money.
Why vision is so important
In New Zealand as in most world cultures, people with disabilities are more likely to live lives that are devalued by society. That is not to say that the lives of disabled people are of less value than the lives of others, but that society accords them less value. We recognise the value placed on people by society by the extent to which the goods, services and opportunities of that society are available to them. For disabled people in New Zealand then this is recognised by the fact that they:
Are given very poor education, if any education at all
Have very low levels of employment if any employment at all
Have limited access to housing
Have limited access to the law and rights
Tend to live in poverty
For these reasons alone then, hope, with action, is so much more important in their lives. We already expect too little from the lives of disabled people, we settle for a false realism of what might be possible. This is despite the fact that time and time and time again, even under the most adverse of conditions, or even with the most minimal of support and the most oppressive of barriers, they do better than we have ever given them credit for.
However, whenever we hold a powerful vision for a life that is better, we embrace hope, we look beyond the moment, to the promise of what life might yet offer. We begin to embrace a true realism, a realism that is life enhancing rather than life denying. This in no way requires us to wear rose-coloured glasses or to ignore the many hardships and difficulties of life. It simply asks that we not become so preoccupied with the barriers in life that we are no longer able to dream. When we resign ourselves to one “reality”, we forfeit the chance to taste the benefits of other realities, many of which may be just as practical as the reality we rely on today.
Start the vision for the lives of disabled people now, from where you are. Ask yourselves the question “what would be better?” Don’t worry about the disability as that leads you to start from what is limiting or what is not possible. Ask “what would they enjoy in life?”, recognising that disabled people have the capacity to enjoy pretty much anything that any other person could enjoy. Enjoyment after all comes from humanity, not from competency. Capacity to enjoy is inherent in human beings. Don’t be limiting or foreclose on what is possible, we all have limitations, we all have things we can not do, but we can all enjoy life. The challenge is to find the things in life that are enjoyable and we all have the capacity for very satisfying things in our lives.
Pay attention to what the person is passionate about. Don’t be too practical about imagining better. If we get practical too early then we become prematurely realistic and close off what we ourselves find too hard to practically undertake. This way the lives of disabled people are restricted by our limitations not by theirs. The good, practical ideas will come. They may well need some figuring out, they may need the support of other minds, but if these ideas are pursued they will eventuate. A powerful vision is one that is what Michael Kendrick would call “sensibly unrealistic”. What he is telling us by this is that just because something looks unrealistic now, does not mean that it is not a good idea. A lot of things we think are impossible are in fact solvable and we can solve them, it is in the working to solve them that we will get to what is better.
We dream not because we are assured that what we explore will be guaranteed, but rather that dreams link us to a deeper promise of life and its potential. It is this potential that rightfully belongs to people with disability as much as to anyone else. We must be very careful when we deny this to them in the name of realism.
In giving consideration to the art of imagining better there are six principals that will provide a strong foundation to us in pursuing what is possible in the lives of disabled people. These are what Michael Kendrick would call Life Affirming principles.
1. Recognising the humanity and dignity of people; No matter what their impairments
It is a tragedy, witnessed again and again, that people with disabilities are not seen as being fully human. When the humanity of one group of people is not seen as equivalent to that of others, it commonly means that the people will be treated “less well”. Were they to be seen as being as richly human, then what can be enjoyed in life would still be held out for them, rather than being withdrawn just because there are limits on their functioning. We must be exceedingly careful whenever people with disabilities are asked to accept and live lives that are clearly deprived when compared to what most people expect for their lives. Better that we aim for a way of life in which opportunities comes early and often.
2. The dignity of human will and freedom
People with disabilities are all too often deprived of the opportunity to express their will, freedom and autonomy. This is not a matter of whether people get to make a choice “here or there” at the whim of their “keepers”, but rather a more fundamental question of whether their human capacity and desire to have say so and influence over their own lives is honoured to the extent it should be.
3. People will thrive best when the fullness of community is available to them
People with disabilities have continuously found themselves at the edges of community life more than in the main flow of it. This has been helped by our pattern of organized service system. Some people even claim that people with disabilities are “meant” to be apart, meant to be with their own kind, as if there own kind were not human kind. However, we have been lucky enough to see that people with disabilities do just fine in the community, once they are properly supported. What is greatly “life-giving” is when people see that community life is where “life” is at its fullest and people with disabilities ought to deeply embedded in it.
4. Growth is ever possible and brings greater life
When our days are “wasted” by avoidable tedium, avoidable routine or low expectations it is easy for people to become trapped in lives that do not reflect their true potential. This can happen to anyone, but people with disabilities are especially vulnerable, because so many people tend to underestimate their potential. Yet, time and time and time again, people with disabilities who have been casually written off as lacking the capacity for growth, learning, advancement and even adventure, have proven such beliefs to be utterly unfounded and without merit.
No one really knows what any person is truly capable of, and there can never be certainty as to the directions people might take in their lives. We must always be alert to the potential for growth, and to the things that could be done to facilitate its expression.
5. People are meant for relationship and love
It is a considerable part of being human that we are capable of relationship, love and intimacy. Such needs are hardly trivial or incidental and lie at the heart of human existence. Yet over and over we refuse to see how they equally apply to people with disabilities. Even if one receives the best care and the most capable support, much may well still be missing from life if people are still struggling to find relationship, love and intimacy.It is therefore “life-giving” to affirm these needs and wants of people, and to do what may be reasonable to assist with these challenges. However, as is the case with everyone else in seeking to live in relationship with another, such relationships bring with them inherent pain and struggles. If people with disabilities are to experience relationship, love and intimacy such pain and struggle must also be recognised in their lives and be honoured and respected not denied and avoided.
6. People can and should contribute to life
We often become so preoccupied with assisting people with the many practical needs that arise from having a disability that their life potential becomes overlooked. However, like others, people with disabilities are seeking to make a difference in the world and to find some personal satisfaction and enrichment in the process.
To conclude, so much of what is important in life requires faith. It often requires that we believe in something before it comes true. If we don’t have faith then we won’t do any of the great things that need to be done, because we do not believe; we will not put ourselves out there; we won’t take a risk. We must be sincerely convinced within ourselves or we will always defer committed action, and when it is the hopes and dreams of life that become deferred or ignored, then life itself and its potentials will fade.To once again quote from the Wisdom of Helen Keller
‘While they were saying amongst themselves it can not be done, it was done.’