“Just parents”, making a difference!

July 7, 2020

I spent May 23 the way I spend a lot of my time lately—sitting in a hearing room at the Maine State House, waiting to see if my elected representatives were moved enough by my testimony to vote the way I asked them to. The issues are often around healthcare, or Medicaid, or special education, and the stakes are always very high, especially for kids like ours who have a disability no one has ever heard of. This time, it was about the right to be my daughter’s legal guardian now that she is an adult.

There is an international movement afoot to drastically limit the use of guardianship to care for people with disabilities. The advocates behind this, with whom I agree on many disability rights issues, call guardianship the “death of civil rights.” Despite that inflammatory rhetoric, I understand their point. As Lidia’s guardian, I, not Lidia, have the right to make all legal decisions about her life. She cannot sign a contract, make a medical decision, or write a check. But it’s not because I don’t want her to; it’s because her doctors, a court-appointed visitor, and a judge have determined that she does not have the capacity to do those things, and allowing her to would put her gravely at risk.

Those against guardianship are promoting “supported decision-making” as an alternative, a process by which Lidia would choose other adults to help her make these life decisions, but the final decision would always be hers. It’s a great idea in theory, and not very different from what we do anyway—we all try to give our kids as much independence and autonomy as possible. But we also want them