Let’s consider guardianship.
One of the controversies with guardianship is people (well, some people, we know who they are) are claiming that having a guardian takes away your basic civil and human rights.
And I have been there. Anyone who has read Soon Will Come the Light or who knows my history knows that in my teens, I was tucked away in a cutsie little corner of the world, far away from everyone else, where I had no rights at all and every decision was made for me. I have not forgotten this, or how it felt. So please understand the perspective where I am coming from here.
Also understand we are not talking about your average, everyday autism here. I am asking about this in relation to the severe cases. The ones that are hidden away that no one sees.
The NCSA position on guardianship can be read here.
Decisions are a part of life. Indeed, this is pretty much what all of life is, making decisions. We are faced with a choice, we ponder the evidence available at the time to the best of our ability, and we make a decision. Then we hope it was the right one because whatever it was, big or small, we must live the benefits or consequences of that decision. (This is what we did with the puzzle piece. We did what we felt was right based upon the information and knowledge we had at the time. As of this writing, I still feel it was the right decision.)
Some decisions are not so important in the big scheme of things. For instance, a little later I will open my freezer, look at what’s there, and make a decision on what to have for dinner. I’ll likely forget all about it in the coming days. Other decisions are much bigger. Employment, housing, marriage, kids and how many, how we manage money. These decisions will affect us for the rest of our lives.
There are absolute requirements for making decisions. These include a certain level of intellect, maturity, and appropriate cognitive and behavioral functioning, among other things. There is absolutely no way to get around making decisions in life. It must be done. If an individual is not capable of making a decision on their own, someone else must make that decision for them.
All of us want to make our own decisions. All of us want to find our own way. I get that. Really. Because those rights were once taken away from me for an extended period of time (as in years) through no fault of my own.
Any advocate (well, any good advocate, heck even any semi reasonable advocate) will tell you safety comes first. Safety is paramount. Nothing is more important than the safety of the individuals. And not only the individuals, but also those around them. It is truth that quality of life ranks second behind safety. There are people who simply do not (or for whatever reason they just choose not to) understand this. Safety must come first. Once that safety is established, then we work on quality of life. This is the way of effective advocacy. (Note that not only must quality of life come after safety, it also does come after safety. Once the safety has been established, advocacy is all about quality of life. There is no higher priority than this. Are you not where you should be or where you want to be? Let us help you get there. That’s advocacy in a nutshell.)
But guardianship is far from a perfect solution. It can be – it has been – abused. I have experienced this. It was abused during those years in my teens. When we assign a guardian, or when a guardian is assigned for us, we are operating on the assumption that said guardian will operate in the best interest of the charge. This is not always the case. It is a position that is easily abused. And there are many kinds of abuse. Physical abuse, emotional abuse, spiritual abuse, sexual abuse, financial abuse. (I have experienced many of these over the years. Things have settled down for me these days and I no longer feel I am being abused in any way. (Because I’m not.) Others are not so fortunate.
As parents, you want your kids to be happy. You also want them to be safe. You cannot guarantee that safety with an external guardian. But to finish that thought – the unspoken part – you also can’t guarantee it with you. Things happen. Sometimes we just don’t see them coming.
The one question I was asked more than any other, most of the time accompanied by tears, was, “What will happen to my child after I am gone?” Even 30 years later, I don’t have an answer. You can’t possibly know. But you can prepare. Trust funds and IRAs and saving accounts and guardians and living arrangements and lots and lots and lots and lots of other tedious things to go through.
Because you love your child.