ASAN misunderstands Guardianship

There was a recent article by Amy  S.F. Lutz in Spectrum News regarding the freedom to chose where one wishes to live.   The article was excellent but also of interest to me was the arguments that ensued in the comments.

It is clear that ASAN (Autistic Self-Advocacy Network) does not understand Guardianship – both how it works and what it is – in this Easy Read Edition  of “The Right to Make Choices” that describes guardianship.  This makes guardianship seem as if the guardian owns and controls every aspect of the person served by the guardianship.

There are several issues that ASAN needs to understand regarding the differences and similarities between supported decision making and guardianship.

  1.  A person is not “put” under a guardianship – there is a choice made in the beginning of the process and one has the choice if they want a guardian or not.  Some people do make the choice they want a guardian and choose that person.  Some people say “no” and that choice is honored.   ASAN seems to miss this first step in a guardianship process.
  2. Guardianship is a legal contract of a choice that has been made.
  3. A person with a guardianship is allowed to vote – guardianship does not remove that right.
  4. ASAN states “Legal adults do not have guardians” and “Legal adults make their own choices.”  Are they saying that those with a guardian are not adults, not legal or what does this even mean?  When Do You Become an Adult may provide some of the answers or it may make it more confusing.
  5.  According to ASAN, Texas is the only state that has laws for supported decision making.
    • Courts have to think about supported decision making options for you before they can assign you a guardian
    • Guardianship is the final option if supported decision making does not work
    • An adult with a disability signs a supported decision making agreement – this is legal as long as the person with a disability UNDERSTANDS the agreement
    • You sign the agreement in front of witnesses.

An example of Supported Decision Making can be seen in this terrifying situation (at least terrifying to me – it may look like independent choice making or supported decision making to some self-advocates though and heralded as “success” for this man).

I have a questions about accountability and responsibility with supported decision making.  Since there are no laws (except in Texas apparently) regarding supported decision making, I have great concerns about safeguards to prevent abuse and vulnerable people becoming targets of predators.   Since supported decision making occurs without any special legal process, who is accountable?  A person who has not attained some developmental steps in the natural process called life, cannot be held accountable for decisions and actions which they do not understand.

I am the guardian of my adult son who happens to have intellectual and developmental disabilities and a shizoaffective disorder.  When he was asked by the Guardian Ad Litem  if he wanted me as his guardian, he said “yes”.  He made that CHOICE which states he wants me to make decision for him that are in his best interest that he is unable to make.

ASAN and every other organization or advocate that says he is being controlled and I make every decision for him are not living in reality.   Sara Luterman has made huge assumptions regarding the parent-child relationship and that of guardianship.  She writes “They do not believe that their children are capable of having opinions about any serious or real issues. They see their children as extensions of themselves, rather than distinct human beings.”

My son is far from a puppet for me – he is is own person with very distinct opinions and is very clear about what he wants and doesn’t want.  There are also areas of life that he clearly has no ideas about – for instance managing any healthcare issues, money or safety issues.  He is unable to call for help if he is in trouble.  He is unaware of unsafe conditions and hazards in the community.  Just because I am his guardian, who he chose to make some decisions for him, does not mean that decisions I make are what I want. The decisions I make for him are decisions that are in his best interest.




2 comments on “ASAN misunderstands Guardianship

  1. ddexchanges says:

    While it’s true that my sister understands more than she is able to express, it’s partially because she cannot express it that she needs a guardian. Making the choice to have one or not is beyond the level of the 18month old comprehension that she is able to demonstrate. I am her guardian not because I want control over her… God knows, I wish she was able to take care of all of her own needs and decisions…. but precisely because she is unable to comprehend most of what is required for her care. Where she can and does express her wants and needs, they are honored. Mostly what she expresses is confined to hats, and rides in cars, greetings or readiness for something she is expecting. She usually won’t express a preference for anything. But she has a delight meter. We judge what she likes best by how delighted or lackluster she is, but that method has drawbacks due to bipolar syndrome.

    Your son, Cheryl, is not only verbal, but also approaches savant level in some ways while in others, he is still a toddler with no judgement to make decisions that could keep him safe. But, he has a much wider scope of interest and and ability to make choices and communicate them than my sister; so your ability to understand and honor his choices is much clearer. That he could even respond to the question of whether or not he chose you as his guardian is far beyond my sister’s capacity.

    Like nearly all of us, I believe ASAN members may only be looking at life through their own metaphoric lenses. The fact that they are sufficiently intellectually able to have membership in ASAN says to me that the experience from which their perspectives arise is much more intellectually advanced than that of your son, my sister and others of toddler mentality. Sometimes, we must accept that another person is different from us, comes from different experience, has different capacities. When that is true, we are bound to be wrong if we assume the other person’s desires are the same as ours would be.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s