We will have guardianship over my uncle, who's developmentally disabled, when my grandparents pass away. He will live with us. My grandparents just obtained guardianship for themselves since that involves yearly investigations of their home (there's always some danger of losing custody based on the whims of the court and their ages and disability) and taking away some of my uncle's rights.
What scares me is that my grandparents' attorney made prima facie judgments about me, stating in casual conversation that my ability to be a guardian would be questioned, gesturing toward the mobility scooter in which I sat. He looked surprised in a negative way when he first saw me--those of you who are disabled know the look some people give when they didn't know you would be disabled, a look that goes beyond surprise--I felt and looked as if I'd been slapped. Ironically, this attorney specializes in guardianship cases for people with disabilities because of his own brother. Later, when I explained my disability, that I raise children, and my grandmother (who likes to brag as grandmothers do) stated what I've done for a living, he looked even more surprised. He later said he didn't think my guardianship would be a problem, but I am still concerned, furious, worried for me and other parents who have disabilities. Do single parents with disabilities routinely have their children taken away from them? Do people get turned down for adoptions or guardianship? After the toddler years, not as much physical caregiving is required and we already have to solve problems creatively to get home tasks done. While there's extra work to care for another person, it's not proportionally that much more over what we must do anyway. It's not as if we by any means live in squalor. I in fact took care of my children myself for a month when we were out of state just before I started researching the scooter. I had a lot of pain, but I did it. Keeping things simple and highly organized and planning ahead helps. If I were single, I would need some help from others, but that's available through friends, family, and other resources.
Why should I have to defend myself based on physical appearance? This is discrimination. Any parent or guardian has the responsibility to admit when they need assistance or cannot parent and there's no reason to prejudicially seek us out, especially when home visits are already required that give a window into his life.
My grandparents told me later they had not said anything about my physical disability. As my rheumatologist pointed out later, if someone who's blind can be governor of New York, why couldn't someone with a disability be a parent or guardian? I really can't think living with me would be worse than living in the state institutions, with a documented history of severe abuse against people with disabilities; there are almost no Medicaid waivers for group homes and this would be the alternative to living with me. I raise children and they're bright, happy, and well. Interdependence among all of us is key.
After the hearing, for the first time ever I heard my uncle express some wishfulness: "If I weren't retarded [his word], I could have got an education and done something." I told him that being a good person is far more important than an education, and that he is.
But yes, attorney, let's question the loving person with the mobility scooter because she's there (despite not being required to be), because obviously people with disabilities are so incompetent that they can't even get to the courthouse or feed themselves or dress up or articulate themselves, much less others or hold an advanced degree, ever work, raise children. Let's instead pretend that the state school where people are beaten, assaulted, neglected is a better or humane option. My grandparents looked relieved this weekend when I said that over my dead body would he not live with family. Members of their church, knowing he has money for retirement--which will cover basic needs if managed very carefully--have been hounding them in order to "help" and implying he has nowhere to go. They keep pressuring my grandparents about their plans and trying to tell them what to do.
Anger. I've just felt anger about this.