Getting Over the Cure

26 January 2007 at 4:18 (Advocacy, Autism/Asperger's, Inclusiveness, Parenting)

You love people for who they are, not for who you want them to be.

Stick that in the back of your mind for a minute. Let’s move sideways to look at some other quotes. These are from Paula Kamen’s lovely book, All in my head: an epic quest to cure an unrelenting, totally unreasonable, and only slightly enlightening HEADACHE. One important thought is:

“There is a difference between getting cured and getting healed.”

Another is:

“Acceptance is not the same thing as resignation.”

These are very potent concepts, the sort that are easily-understood on the surface verbal level, but take longer to fully integrate through all the layers of one’s consciousness.

“Getting cured” means being rid of a medical or psychological problem to become healthy. In contrast, “getting healed” does not mean that one needs to be rid of the medical or psychological problem in order to move from merely surviving to living life fairly happily.

One can accept disability without being resigned to the concept that life is ruined because it will never be the way that was anticipated. Instead, one accepts that life will be different, and that this is okay.

When parents learn that their child has some kind of disability, they go through a sort of grieving process. They mourn the child they didn’t get or will no longer have. (In response, Jim Sinclair’s essay, “Don’t Mourn For Us” is a thought-provoking and reassuring essay for parents of autistic children.) Not everyone grieves in the same way, and not every parent experiences a lot of grief — sometimes there is more relief for having “figured things out” and being able to name, understand, and thus work with the difficulties or differences.

Sometimes parents get “stuck” in the blame and bargaining stages of grieving. They have not accepted the disability, and their child is not okay as a disabled person. In the denial is the core myth that somehow out there is a cure, and once they can fix the problem, then everything in their lives will be okay. The parents dwell upon the past and perceived injustices, and nothing less than total “cure” is acceptable. Sadly, this means that until the parent can announce the child is cured, then the child is not fully acceptable and loved as a full human being. This is devastating to the social, spiritual, and even physical development of the child.

In families that already dysfunctional from other issues, the disabled or different child can serve as a distracter from the real personal and interpersonal issues, and may get stuck in the rôle of the scapegoat: “things would be okay if it weren’t for this tragedy”.

When I say that, “You love people for who they are, not for who you want them to be,” that does not mean that one allows bad behaviour, or does not try to help a person with therapeutic or educational approaches that enable a person to achieve as much as possible. Rather, it means that you love the person for who and what they are, and that love is not conditional upon the person pretending to be something they are not.