Walking Toward Freedom
One Family’s Journey Into Self-Determination
John O’Brien & Connie Lyle O’Brien
2000 – Seattle Washington
The disposition of humankind, whether as rulers or as fellow citizens, to impose their own opinions and inclinations as a rule of conduct on others is so energetically supported by some of the best and by some of the worst feelings incident to human nature that it is hardly ever kept under restraint by anything but want of power; and, …unless a strong barrier of moral conviction can be raised against the mischief, we must expect, in the present circumstances of the world, to see it increase.
— J. S. Mill, On Liberty
Introductions …………………………………………………………………………………………………………2
Where are the limits of self-determination? …………………………………………………………………4
Steps along the way …………………………………………………………………………………………………7
A personalized service design ………………………………………………………………………………….10
Almost losing the way ……………………………………………………………………………………………13
The growth of irreconcilable stories………………………………………………………………………….15
The importance and costs of individual funding …………………………………………………..18
“Letting go” or “Growing into new relationships”?…………………………………………………18
The problem of authority ………………………………………………………………………………….20
Back on track ……………………………………………………………………………………………………….23
New authority boundaries …………………………………………………………………………………23
A new pattern of teamwork ……………………………………………………………………………….25
Continuing uncertainties…………………………………………………………………………………..30
Looking to the future …………………………………………………………………………………………….31
Introductions
The reason to reform services in line with the principles of self-determination is to increase the control people with developmental disabilities have over the conduct of their own lives, to remove the power that service systems have to dictate such fundamental matters as where and with whom they live and who assists them, and consequently to decrease the opportunity that service workers have to rule over those they assist by imposing their opinions and inclinations as a rule of conduct. Such control of everyday circumstances provides a foundation for people exercising the rights and fulfilling the responsibilities of citizenship. However, as we will see, the ability to choose who assists a person and to specify the terms of that assistance does not replace a thoughtful search for the moral conviction necessary to steer the relationship between people and their assistants.
