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 to be safe. The problem is that the new law put no safeguards in place. Lidia could choose anyone to help her, including people with a criminal record whose only intention would be to exploit her in ways I don’t even want to think about. There was nothing in the law giving the judge discretion to vet these people once guardianship was denied.
We—a group of parents—succeeded in amending the law to maintain guardianship as a viable option, and to give judges the discretion to oversee supported decision-making in cases where guardianship is not warranted.
When we learned about this new law—a few pages snuck at the last minute into a massive overhaul of the state’s probate code—we sprang into action. We are a network of parents in Maine who try our best to keep track of these things, get the word out, and take turns attending hearings, writing letters, and, when necessary, showing up en masse when the Legislature needs to see how serious we are. We contacted members of the Judiciary Committee to explain how dangerous this law would be, particularly to people like Lidia, who is very verbal and can tell you exactly what she wants but in no way understands the consequences. We got a legislator on the committee to champion our cause. When we knew we had their ear, we proposed an amendment to the law that would preserve guardianship and add protections around supported decision-making.
The group that submitted the law in the first place is an organization made up of hard-core lawyers, and they were not happy with us. But after listening to our testimony at a hearing, and reading our letters and emails, the senator who supported us told them there was no way their law was going to go into effect without some kind of amendment, so they’d better get on board. And, grudgingly, they did.
At the final work session, we waited six hours for the Judiciary Committee to act. After 6 p.m., they voted unanimously to support our amendment. Frankly, we were stunned. None of us had ever done anything like this before. One of the fathers in our group is a lawyer who drafted our proposed amendment, but the rest of us are “just parents” who have learned out of necessity to fight for what our kids need and deserve. It helps that we have each other, to lean on for support, and to step up when one of us just can’t face another day of hearings … or needs to pay attention to their day job!
The following week, we went out to dinner to celebrate. Now we’re back at work, looking for allies, making contacts with the local ACLU and AARP, who support many of the same policies we do but don’t understand how those policies affect our kids. It would be so much better if I could just be Lidia’s mother instead of her advocate/defender/crazy-person-on-the-other-end-of-the-phone, but in the meantime, it’s empowering to know that we can get policymakers to listen when we have to. – Lisa Wesel
Bio: Lisa Wesel lives in rural Maine with her husband, Todd Woofenden, and their daughters, Lidia, 22, who has Dup15q, and her younger sister, Anita, who is heading into her junior year of college. Lisa works as a freelance editor and writer, after giving up a career in newspaper journalism to care for and advocate for Lidia. Freelancing offers Lisa the luxury of working on her own schedule (often well after midnight), leaving her days free for advocacy work.