The River is Wide

In class tonight, my group did a presentation on the organization I work for. It's an awesome place; we provide federal/state-funded services for people with disabilities. After the presentation, my professor walked down to the front of the class. Now, mind you, I revile him a bit -- he's incredibly sexist, homophobic, and racist, an older guy who loves to say tremendously offensive things to get a rise out of students. But tonight, he told us a story he's never shared with a class. His first daughter, born in 1953 when he was only twenty years old, was deprived of oxygen during a traumatic labor and assumed to be, as he stated, mentally retarded. (Which is, by the way, a word I hate). As he told the story, the doctors decided when she was seven or eight months that she would be intellectually disabled for the rest of her life -- not "normal." So, because they had connections and money as he said, they sent her to a private institution in central Louisiana.

Couched in the language of a man whose understanding of disability is little changed from the 1950s and 1960s, I heard a young father describe the pain of letting go of a child. I teared up, thinking about his young daughter not knowing a life outside of the walls and grounds of an institution. I can't imagine. I hear that same pain in parents who have lost a child, in mothers who gave up their children for adoption, in parents who have made unimaginable -- but still incredibly strong and powerful -- choices that affected the rest of their lives.

I work with infants and toddlers with developmental delays and disabilities. My kids come from every walk of life. Their needs and concerns range from minor concerns, speech delays they will outgrow with a bit of therapy, to neurodegenerative diseases and feeding tubes and breathing machines. I can't imagine if my kids were institutionalized. I can't imagine the pain that would cause for them, for their families -- the loneliness and isolation, the opportunities and lives they would miss out on. I know that in the 1950's, institutionalization was considered humane, even kind. I know that we have made leaps and bounds in society toward decreasing the stigma against people with disabilities, and I know this fight was led by the parents of children, by people with disabilities, by anyone and everyone who realized institutionalization is not humane.

But I still hear this stigma every day. I hear it when my mother tells me approvingly of her friend, who institutionalized her young daughter with Down syndrome in the 1990's. I hear it when someone says, "That's retarded." I hear it when people say things like, "I couldn't do what you do. How do you do it?" What do you mean, I want to ask. My children and their parents aren't pity cases. I don't catalogue the things they can't do, the milestones they haven't reached yet, the ways they are "disabled." We celebrate their strengths. We set goals for them. We work with them, not for them, not at them. With them. We cry with them when they hurt. We offer what we can, and we urge them to go farther and do more and dream bigger than they are told that they can. We give them the resources and the knowledge to advocate for themselves. We listen, We agree, when a grandmother tells me that a doctor said her three-month-old grandchild will never walk... and she tells me that she will never, ever stop believing that he can.

My kids, my parents, are amazing. I have so much respect for them. They have taught me strength in ways I can't even explain. They have more abilities than most anyone I know. They may have specific needs, but who doesn't? They may need help, but so do we all. I don't do my job based on pity. I don't do my job with the idea that I'm offering a service to be passively received, even if that is the way the system is set up. My parents, my kids, are active participants -- they work harder than I do. They have the dreams and goals, and we just help meet them. That's how I do my job.

I cut my teeth on queer advocacy. I became an advocate because I saw a need -- because I couldn't keep my mouth shut when someone discriminated against those I cared about. It's not about identifying as an advocate or an activist for me, and it never will be. It's about seeing injustice and disparity and the pain borne of discrimination, harassment, and violence and not being able to stand by quietly. It's about recognizing that I can use my privilege, my knowledge, my strength, to stand with the people around me who need an ally. It's about holding up a microphone when someone else needs to share their struggle.

Anyway.

I don't claim to know everything -- or anything -- about what it means to be differently abled in our society. I don't know what is best for a community I don't belong to. But I do know that I would fight to the death for my kids to have the same opportunities, to be treated with respect, not pity, to have their needs acknowledged and met, not ignored. Even if advocacy wasn't part of my job description, I will always do it. Social justice and equality isn't just about queers. It's about racism. It's about sexism. It's about poverty and disparities and violence, it's about my kids, it's about adults with disabilities, it's about creating a society where needs and differences can be respected and recognized without being unequal. It's about creating a world where families can raise children with the support they need from the community, instead of institutionalizing them.

Oh, my kids. They are a part of my family, a part of my heart, a part of my pain, a part of my dreams. I worry about them, sometimes, when I wake up in the middle of the night. I wonder who they will become, what lives they will lead years from now. I wonder what their parents would think of me, of my blog and my queerness. I struggle to balance my own life with the drive to want to put all my needs to the side, just to focus on theirs. I closed the case files of three children this week, and I opened two more, and I found that 'hello' and 'goodbye' are equally fraught with complexity. I hear stories, like my professor's, and I am reminded again and again that children and adults with special needs and disabilites are everywhere -- but we don't tell these stories enough, we don't talk about (or against) stigma enough. So I'm making a commitment to do so -- to speak up every time someone expresses pity, every time someone says "retarded" or "crippled" or something equally offensive. I'm making a commitment to remember that social justice isn't just about my community, but about every member of every community.