The blog this week was written by George Martin, President of The Arcadia Institute One of the most significant principles that has been articulated in recent years in the disability field is that people with disabilities should have the right to make choices about whatever affects their lives. This is a principle that I affirm. Over the past thirty plus years I have seen people in large state institutions in which individual choice was rarely, if ever, a reality. I have seen professionals, either as individual case workers, or in teams, make decisions about where a person will live, with whom she will live, and also decide that that person must move, all decisions made without the individual’s participation. I have seen parents make decisions for their son or daughter with little or no regard for their child’s preferences.
So, the principles that individual’s must have a choice in matters that affect their lives is a good one in and of itself, as well as a counterpoint to years in which others have exercised control.
However, as with most good principles, this one has often been used as an excuse by professionals to avoid taking responsibility. It has received lip service without any real commitment to honoring what the person chooses. Many meetings about someone have taken place without that person in the room. I have also seen professionals use the principle of individual choice as a means of excluding parents from decision-making. I have seen agency directors cite the principle as a defense against making needed reforms in their programs.
In our efforts to reform programs, agencies and systems, we often raise up one idea, or principle, to the exclusion of others that matter. I think that the principle of choice is often used to erode the role of both parents and professionals in decision-making. The principle of individual choice is just one among several that need to be considered in the decision making process. A family should participate, and their participation should be limited or blocked only if it is clear that they are not acting in the best interest of the individual. A professional has responsibility to offer guidance, and that principle should not be de-valued, or discarded, in the name of respecting individual choice. And maybe, most importantly, the larger community beyond the disability-specific programs and organizations should also have an important voice in the lives of people with disabilities. After all, we are calling upon that community to step forward and become responsible participants in the lives of people with disabilities.
We would like to hear your comments.