Taking a longer wider view...

The value of parent associations - reflections on 22 years of achievements. This paper is a transcript of the address I gave as guest speaker at the Annual General Meeting of DSA NSW on 25th August 2002 and is reprinted from DSA NSW Newsletter, Spring 2002. The thoughts are not original - they have arisen from many casual, and some very personal, discussions between families and staff over a long period, and they merit explicit acknowledgement in a more formal forum.

O'Connor, J. (2003) Taking a longer wider view.... Down Syndrome News and Update, 3(2), 49-52. doi:10.3104/dsupdate.226

The UP Club is a social and development group for adults with Down syndrome. Sarah is a volunteer, who has a brother, Ross, with Down syndrome.

The UP Club is a social and development group for adults with Down syndrome. Sarah is a volunteer, who has a brother, Ross, with Down syndrome.

Since my position at DSA NSW is "Information Officer", I thought I should offer some thoughts about what we know about Down syndrome and the people it affects. But I'm not about to provide a list of facts or research findings (you can check our website, read the Newsletter closely, or make an individual request to the office for that!).

As an organization, we have come a long way in the 22 years the Down Syndrome Association of New South Wales has been established, and I'm increasingly conscious of how far we have to go - there is still much to learn, many families who need support and information who are not getting it, and new issues and opportunities are arising at a rapid rate.

As the children of the founders of the DSA grow into adulthood and dare we say even early middle age, we are still learning about their abilities and their needs, and about how our community responds to them.

My years at the DSA, have allowed me to see the "Down syndrome community" through a different prism, because of the contact I've had with so many families and professionals over a sustained period - a longer and wider view, in addition to the personal insights Declan has provided. But it is nevertheless a personal view and I am conscious that hindsight still provides the greatest acuity.

The birth incidence of babies with Down syndrome has changed little in 15 years in New South Wales and we are continuing to support new families more effectively on a number of measures: reaching more of them; better professional education; using information technology; outreach to previously unsupported families; using better information about what families want and need; having better staffing levels to allow for more timely responses.

When Declan was born in 1985, we had easy access to the information that was available, although it was somewhat more limited than now, and we were very grateful for that. But I am deeply indebted to those intrepid parents who through the years had the strength to defy the conventional wisdom and to bring their children up at home.

They sowed the seeds of our communities' and families' realisation that people with disabilities, including Down syndrome, are perfect as they are, not broken, not needing to be fixed, but needing an environment that supports their development throughout their lives. Rather like the rest of us! In the wider community, that realisation still has some way to go, and even within the "disability field" attitudes continue to be challenged and challenging.

We still hear the language of illness applied inappropriately to people with Down syndrome, about their disability (betraying an underlying "disability as pathology" mindset), and ironically we also hear of health concerns dismissed as "part of the disability", with the unnecessary neglect of treatable health problems.

Those pioneering parents, who defied those chilling conventional wisdoms gave us the freedoms and services our children and adults benefit from today. We might still sometimes encounter prejudice, ignorance and poor practice within education systems, for example, but we now have a groundswell of support and mountains of information and experience about better practices to draw upon. We now receive more requests for information and training from schools than complaints from parents about schools denying children their educational rights. The children of our pioneers had no legal right to an education at all, and they were responsible for "special education" existing at all. We are the direct inheritors of their commitment and energy, and we should never lose sight of that.

With much easier communications, we now have access to amounts of information, often at the press of a button, that has been a huge boon to us in many ways. We have ready access to medical and educational information, for example, from experts around the world. The degree of co-operation and generosity in making information readily available is remarkable, and unlike many other, more competitive fields. And it is noteworthy that a high percentage of the professional experts are parents of people with Down syndrome (such as Dr Sigfried Pueschel, Prof Sue Buckley, Dr Phil Matthieis, Dr Len Leshin to name a few).

Below: members of the UP Club with Martin Dingwall, who played Flynn Saunders in

Members of the UP Club with Martin Dingwall, who played Flynn Saunders in "Home and Away".

What we "know" changes over time, and we need to be able to let go of some ideas to take on new ones. But it pays to keep a sense of humor and perspective. In a recent email discussion, Cheryl Ward, in Virginia, reminded us that when her daughter, Stefanie, was a baby (in the 1980s), it was often said that people with Down syndrome could not read. Those who had learned to read were labelled as the exception. Now we know that most people with Down syndrome can expect to learn to read, we worry about those who don't, and label them as the exception. I recall being told (by someone with some authority) that children with Down syndrome were unable to develop the thought processes required for imaginative play, but I had to advise my son's teacher, when he was 8 or 9, not to be concerned about his mental health when he pretended to be Sgt. Micky McClintock from the television drama "Police Rescue". I wondered what the other 9 year old boys were playing?

Access to information and communication has also improved our provision of resources and support to families from diverse cultural and language backgrounds. We have swapped translated resources, for example with many other organizations like ours, including recently, the DSA of Lebanon, DSA of Hong Kong, and last month with Steve Booth, an English parent, formerly an Arabic translator in the British army, who sent us his translation of "Welcome to Holland" into Arabic.

It has also opened our eyes to how rich we are in terms of the support we can offer each other with a comparatively high degree of comfort. Most people with intellectual disabilities throughout the world still indeed "suffer" from discrimination to a far greater degree than most of us will ever encounter.

These are just a few examples of the progress we have made. The DSA of NSW is well regarded for the quality of the support we provide on a state-wide basis, on what is and always has been a very tight budget, with a very small input of government funding.

I would like to highlight just two of the areas in which I think we need to develop our skills and resources, and I would value your input about how we can do so, as staff, and I know that the Committee is interested too.

Firstly, there is increasing recognition at a bureaucratic level (if not at a political level) that as the population in general is ageing, so is the population of people with intellectual disabilities. The reality is that our children are likely to live long lives, for which we need to know how to prepare them, and to ensure that the services they will need are in place, to ensure they will continue to enjoy the quality of life that people in this country are entitled to expect.

Just last week I was asked to address a meeting of regional planners from the NSW Dept of Ageing, Disability and Home Care about issues to do with ageing and dementia in people with Down syndrome - an important opportunity for us to have input about long-term services.

Di Cook, one of our founding members, is chairing a subcommittee looking into what we need to know about options for living in the community, and to make recommendations about where gaps exist in the types of options available and how they might be filled. We are only too aware that the quantity of service provision is nowhere near sufficient for the need.

Information resources about ageing processes and health in ageing is becoming more readily available, and its collection and dissemination are priorities.

The second issue is less well defined, and perhaps less comfortable, but needs to be addressed nonetheless.

We have all fought our own "battles" small and large for, and sometimes within our families, and for our children's rights and needs. Fortunately for many of us, the day to day experience of family life including a member with Down syndrome can be relatively straightforward: our children enjoy good health, and quality of life, have had access to a better educational experience than would have been possible in the not too distant past, have access to a great variety of life's experiences because of our own and the wider community's attitudes, and they are a delight to us. We don't always know what the future holds, of course, but we are generally optimistic. Many of us have said that had we known how well we would be able to meet our child's needs and build a good family life, we would not have felt so very concerned about the diagnosis of Down syndrome. Our children have been our very best teachers.

We celebrate our "stars" and are delighted and often surprised by their success, the variety of their achievements, and their determination. And so we should celebrate! We are encouraged by looking at the achievements ahead of us, and hope that our children will reach for the heights as well.

But sometimes we overlook an important point that we all really do know: all people are unique, including all of those with Down syndrome. All families are different, our values differ, our experiences with our children are different. There is no "one size fits all" way to live. We hate to be stereotyped, and we hate it when people with Down syndrome are stereotyped.

We can all draw inspiration from the achievements of others - but do we really measure our worth as people by the same yardstick as elite athletes such as Cathy Freeman or Ian Thorpe's sporting achievements, or the most elite achievers in any other field? While we are encouraged by such success and admire the achievers' talents and work, we do not feel diminished if we don't "measure up" on the same scale.

Yet all too often we apply such external measures to people with disabilities, sometimes even to our own children. We might give credit to achievement itself, as is due, but not enough to the qualities that made it possible: the willingness to put in hard work and persistence in the face of perhaps repeated failure. We can too readily ignore how much effort it might take to achieve an apparently ordinary goal, or we do not acknowledge the effort separately from the achievement. Or we don't closely examine how much effort it takes on the part of others as well, to achieve an extraordinary degree of success. It is very, very hard work, and we can't all do it, or at least not all the time.

I read some advice from a therapist recently who recommended that we should choose our language thoughtfully in praising a child's efforts: to say "well done", or "that's great" in recognition of the effort or slight improvements rather than "that's better", or "nearly there" types of phrases, that a child might interpret as "still not good enough, no matter how hard I try" and be discouraged rather than encouraged. A principle that could be usefully employed more widely.

For some families, the challenges they deal with every day are beyond imagining for most of us. For some people with Down syndrome, the achievements they make are small and slow by external measures. Some children face enormous developmental challenges, perhaps complicated by health problems (like infantile spasms, or extremely low muscle tone or profound hearing loss or a combination of a number of problems), coexisting developmental disabilities (such as Down syndrome and autism, or Down syndrome and cerebral palsy), additional communication disorders (including verbal dyspraxia, and again, hearing loss).

A number of families whose children have a dual diagnosis of Down syndrome and autism (being able to get such a diagnosis is a recent phenomenon) have told us that while they always knew their children were different from other children with Down syndrome, they have felt isolated even within their "Down syndrome circle" by hasty judgments about their parenting skills, or about the "work" they put into their child's development, or just because their child was so different - and sometimes those unhelpful judgments come from other parents, whose children are more able.

The Down Syndrome Association is sometimes criticised for being "too positive" - for only telling the "good news" stories. Or people think we are only interested in those who "do well" according to some unspecified measure. Very often such judgments are quite superficial and easily countered (such as when people haven't actually read our publications, or have based their comments on hearsay), but sometimes they are more justified, and we need to respond if we are to retain our credibility and our stated aim of supporting all people with Down syndrome and their families.

We don't know what the limits the potential of anyone with Down syndrome are, just as we don't really know that for anyone else. However, I strongly suspect that most people with Down syndrome are working proportionally nearer to their limits every day than the rest of us will ever be required to. As one example: many people with Down syndrome find communication a daily challenge - yet they are mostly very patient with us, and persist beyond the point where we might give up, such is their drive to be heard, to be listened to, and to make their contribution.

Think about how exhausting mentally and physically it is to work in a new and demanding environment until you find your feet. You feel assaulted from all sides by new information that you haven't the time to process, let alone act upon. I would recommend that you borrow the video "F.A.T. City" from our library to help you to imagine if every day was like that!

One of Declan's finest qualities (and he has many!) is, I think, his willingness and commitment to face every single day of his life knowing that he will have to work much harder than most to live an ordinary life. Like most people with Down syndrome, he knows he has a disability and that the rest of us are glad that we don't. How much easier would it be to just let someone else do everything for you, make your decisions, do your thinking? Sometimes the effort wears him out - so we take a break and regroup.

One thing that is guaranteed to get me ranting (there are others!) is an assumption or even a suggestion that a lack of skill or developmental progress, or unwillingness to participate on the part of a person with an intellectual disability (especially my Declan!) can be laid at the feet of "laziness": usually a hasty, ill considered response from someone completely lacking in both insight and empathy - and don't even mention, that convenient scapegoat "stubbornness" !!!!

Jo and Sue in the DSA NSW office.

Jo and Sue in the DSA NSW office.

It doesn't say anywhere in our constitution, our aims, vision or mission statements that DSA NSW will support people with Down syndrome only if they achieve "x", "y" or "z". The driving force behind the foundation of the DSA in 1980 was that parents (of then mostly young children) knew that they could support each other better than they had been supported in their children's early days. As those children have grown and continue to grow into adulthood, and eventually to old age, we have no brief to set "entry limits" of any kind. You just have to have Down syndrome, be a family member of someone who does, or to be interested in someone who does.

However, "tea and sympathy" are rarely enough! We need to base our support strategies on real knowledge. We need to know what families need and want, and how they want to be supported, as their needs change over time, and as they vary from family to family. So we need to make it possible for the voices of those families who may feel marginalised even within the "Down syndrome community" to be heard. We can only report the stories that people are willing to tell, or have the means and time to tell - influencing any one of these might be a starting point. We have a good grasp of the outlines of the big picture, and much of the detail, but we are still filling in gaps. It is a little like the TV pictures you see with faces pixilated at low resolution - you know it's a face but you can't quite distinguish the features, and it changes as they move, just when you thought all would be revealed.

There is a trend in publications about people with disabilities and their families towards a greater acknowledgement of the variety of our experiences. More families are "coming out"! When I first joined the staff of DSA NSW in 1989 we had a small library of about twenty books - everything that was currently published in English, two articles that were occasionally disseminated to enquirers - one on a 1981 research study of vitamin supplementation (which showed no benefits) and some very po-faced "advice" about masturbation!

Both the lay and professional literature has blossomed since then, and our library has grown to more than 800 items that fill a room when half are out on loan, we have two filing cabinets of information articles that we send out in response to several requests each day, and a website of about 100 pages with links to fifty other sites.

Judy Davidson, our Parent Support Coordinator, in the library

Judy Davidson, our Parent Support Coordinator, in the DSA NSW library.

We've been through a long period where we were necessarily concerned to counter the unnecessarily dark and dire prognostications made about people with Down syndrome, and we need to continue to do that. But we are now becoming more self-critical and analytical about the qualities (the breadth and depth) of what we know and what we do with it.

Ann Penhallurick will be presenting a workshop on building adult lives with people with intellectual disabilities, and the values we bring to the experience, at our Families' Weekend Conference in October, and Lorna Parker, our keynote speaker at the conference, will be looking at how the theories of multiple intelligences can be applied by and to people labelled with intellectual disability. I am confident that both speakers will push us to fresh insights about our families and the people with Down syndrome whose interests we hold dear.

Another trend I've appreciated in lay publications recently is a growing tendency to "lighten up" a bit. It's easy to be very earnest about issues to do with disability, but the ability to see humor in some pretty serious situations gives us a sense of perspective, as well as being an effective teaching tool. Incisive cartoons allowing people with disabilities to have their voice heard, Cindy Johns's article about her shock at the unexpectedly rapid onset of adolescence (that she described as her very short 12 year old son going into the bathroom and coming out a very short 13 year old with a moustache and hairy legs), and a string of slick one line responses to frequently-expressed platitudes come to mind.

I'd like to leave you with some thoughts on difference, values and perspective from one of my favourite funny men, and Declan's, the wise Scots philosopher Billy Connolly, who said that "there is no 'normal' - there's just you, and then there's everybody else" and on another occasion, that "there is no bad weather, just the wrong clothes".

Reprinted from DSA NSW Newsletter, Spring 2002.

Jill O'Connor is Information Officer for the Down Syndrome Association of New South Wales, Australia www.dsansw.org.au/