Published in Inroads, the newsletter of Citizen Advocacy Eastern Suburbs, Issue 9 (August, 1999)
These are located on the Citizen Advocacy Network website,
in the section on articles and policy documents.
Dost thou love life? Then do not squander time, for that’s the stuff life is made of. -- Benjamin Franklin (1706 - 1790), US scientist and statesman
The other day, much to my frustration, I found myself having to endure one of those recurring, but seemingly unavoidable, experiences of modern-day life: standing in a long queue with other bank customers, waiting interminably to be served by one of the outnumbered tellers of the financial institution. In retrospect, I probably waited for no more than 15 minutes; and while I might be accused of having a low threshold of tolerance, it would not have been a surprise to me to learn that my reaction of annoyance was shared by others who were equally zealous about the constructive application of their time.
Yet, in a subsequent moment of reflection when my emotional Richter Scale was not on the rise, it occurred to me that, in terms of loss of valuable time, my occasional 15 minutes of idleness pales into insignificance compared with the intolerably long periods of inactivity that typify the daily lives of many people with disabilities. That reality was, yet again, reinforced for us (the staff of Citizen Advocacy Eastern Suburbs) recently when the owner of a privately-run hostel for people with disabilities, in referring to one of the residents for whom we were recruiting a citizen advocate, nonchalantly stated: "He has all the time in the world." It was a candid admission that the man was simply languishing in inactivity within the walls of the institution, as life passes by him.
For this man and many other people with disabilities, it is difficult or even pointless to differentiate one day from another -- since with few signposts of worthwhile activity, each day starts to look like the next one, in what might be called a recurring "groundhog day existence," in allusion to the film Groundhog Day. (The film is an allegorical tale about a TV weatherman who, in reluctantly covering the annual groundhog day festival in a small American town, finds himself stuck in a time-warp that forces him to relive the same tedious day again and again.) Whilst the premise of the film proved to be an effective vehicle for some funny scenes, there is little amusement to be derived from contemplating the everyday reality of people with disabilities whose lives are at an experiential and developmental standstill. The dissipation of people’s time, the denial of opportunities for them, and the diminution of their potential, has been referred to (by Dr Wolf Wolfensberger, the founder of Citizen Advocacy) as the wound of "life-wasting."
An insight into the fate of people with disabilities can be gained by examining the sorts of assumptions about them which prevail in society and, derivatively, the implications for the content and direction of their lives.
Unfortunately, because our society does not value people with disabilities, many assumptions (whether conscious or not) reflect the low esteem in which they are held. In this vein, some assumptions are that people with disabilities: are not important, and their lives are not worth living; are deserving and accepting of their lot in life; are not capable of learning, growing and developing, or at least not at a pace, or to a stage, that is deemed to be satisfactory; cannot contribute to society; and so on. When assumptions such as the above become embedded in the minds of others -- and particularly in those who are in a position to exert influence over, or make decisions for, people with disabilities -- these convictions can generate a destructive power which indelibly impacts on people’s lives.
Nowhere is the juggernaut of negative assumptions more evident than in many service-provision facilities for people with disabilities (such as accommodation and employment agencies), where the culture and modus operandi can effectively ensure that service-recipients remain in a vast wasteland of human potential. A visit to, and even cursory observation of, such services to people with disabilities, can serve as a striking testimony to the reality of life-wasting of its clients. For example, in sheltered workshops and in non-vocational "activity" centres, many clients are not engaged relevantly, efficiently, sufficiently, or at all. It is not uncommon to see employees with disabilities of a sheltered workshop being assigned, and carrying out, tasks which are not commensurate with their level of skill, and having to work fewer hours than their counterparts in regular industry. Worse still, for people without daily work or activity, the majority of time may be spent at their residence, playing a waiting game. Waiting for attention from staff, waiting for someone to plan or initiate an activity, waiting for staff and other residents to be ready in order to embark on a collective activity (such as a group outing); waiting for and with others in anticipation that something will happen, as the clock of their lives ticks away inexorably.
Even from the microcosmic level of the experience of our Citizen Advocacy programme, we can cite the circumstances of many people with disabilities who have had time and opportunities slip by them, and whose fate would have remained unchanged without the involvement of advocates. The following are just a few examples which provide a glimpse of the deprivation of people’s experience and potential:
a teenager with a mild intellectual disability, having been educated to high school-level at a special education unit in a regular school, graduated last year -- but is not able to read or write; an elderly man -- despite having spent all of his years in Western Australia, and living relatively close to the City of Fremantle (about 45 minutes travelling time by car from his residence) -- had never been to the popular historical port city, as his advocate discovered with incredulity when they visited there; a young woman had been detained in a highly restrictive facility for many years, and without the stimulation of any developmental activity, because she wore the albatross of labels such as "difficult to serve" and "dangerous"; a woman in her mid-fifties recently faced enforced retirement, having worked all of her adult life in a sheltered workshop, even though (given her level of ability) she could easily have been employed in a regular workplace; several people, who are clients of accommodation services, had been sentenced to a life of soul-destroying inertia and tedium (until they were matched with citizen advocates).
The practice of Citizen Advocacy is guided by recognition of the sobering reality that despite the presence of formal, paid services -- indeed, commonly, because of such services -- the well-being of people with disabilities is at risk, necessitating advocacy on their behalf, including the kind of responses provided by personal, voluntary advocates. That citizen engagement is indicative of their conviction that the lives of people with disabilities ought to be taken seriously, and that there is a compelling need to address their protege’s life-conditions -- including those which contribute to life-wasting. Citizen advocates believe that people’s time is precious, and are therefore prepared to make efforts to release the pause button which has freeze-framed the existence of their proteges. Fortunately, for the people mentioned in the examples provided above and for other proteges, the presence, role, and actions of citizen advocates has ensured that people with disabilities do not have to "wait out their lives."
In our programme, the responses of citizen advocates have included:
identifying and securing suitable job opportunities for their proteges; advocating for their proteges to live and work in environments which are more likely to be life-enriching and competency-promoting; teaching their proteges basic literacy and numeracy, or arranging for others to provide such training; lobbying relevant service-providers for their proteges to be engaged in appropriate and meaningful activity; broadening the experiential and learning opportunities for their proteges by introducing them to a range of people, occasions, and activities.
In many Citizen Advocacy programmes, and in countless ways, advocates continue to cultivate the garden of potential of their proteges. And in doing so, citizen advocates are demonstrating that it is unacceptable for people with disabilities to have to kill time before time kills them.