Saturday, April 19, 2008

More on the KEJ Case

The KEJ case (described below in Linda's post) has been of significant concern to FRIDA members since it was first reported in 2005. I wanted to add some details that were not included in the story so as to round out the picture.

First, KEJ's cognitive disabilities stem from a traumatic brain injury she sustained as a child in a car accident, in case this has not been clear.

Second, although Equip for Equality is named only as a "disability rights group" in the Tribune story, it is the Illinois state protection and advocacy agency, with a federal mandate to safeguard the rights of people with disabilities. In winning the appeal on behalf of KEJ, EFE is basically doing its job in protecting KEJ's civil rights. That alone deserves recognition. As a society, we do not recognize the victories of P&As as much as we should.

Third, a really big question still hangs in the balance: who pays for the guardian's legal fees in this case? Does the guardian have to pay, or does the money for these proceedings have to come completely out of KEJ's trust? Believe it or not, apparently the guardian is reportedly within her rights to have brought the original petition for sterilization before the court, and at least partly because of that, the money appears to have to come out of KEJ's trust, never mind that right now the cost is reportedly over $100,000. The decision on the final amount has gone back to the trial judge. I feel that in having had her intentions/will contested by her guardian, KEJ has been victimized and will be forced to pay for a proceeding that was never her idea to begin with. This is ridiculous.

The problem is: can legal processes be regulated so that guardians seeking to take care of their ward's health can be able to complete the necessary legal proceedings, but should their actions contradict the stated wishes of the ward, can the ward not be financially penalized? Can legal regulations be posed in such a way as to absolutely ensure that only sterilizations that are medically necessary are performed? This last question has consumed the thought and energies of a number of disability rights and guardianship advocates in Illinois.

So, the decision regarding payment of legal fees will be interesting to learn.

Hopefully within about a week, the appellate court opinion will be made available online so that the public can review the details. I think it will be well worth reading.

In my view, the most valuable aspect of this case is that it has been made at all public. This is a significant issue affecting many people with disabilities and their guardians, especially women but also many men. Dealing with the sexual and reproductive lives of people with disabilities is something that society must discuss out loud WITH independent people with disabilities, wards, AND guardians.

Relegating the issue to the confines of the doctor's office covers up how significant the issue really is and how many people are affected. The secrecy also fuels stereotypes, for example: that people with disabilities are burdensome and must be "managed," that people with disabilities are too vulnerable for sex, that people with disabilities can be sexual monsters, and that people with disabilities cannot be parents.

I realize that there are folks with very severe disabilities whose guardians will emphasize that their wards are not capable of any kind of judgment. However, a) humankind's ability to judge lies on a vast spectrum of apprehension and b) I don't think American society's ability to deal with folks of many different disabilities is very sophisticated. We're first graders, at best. Remember first grade?