Is the disability rights movement different from other civil-rights movements in a critical way?

I've seen quite a few comparisons of the disabilities rights movement to other civil-rights-related movements, such as those on behalf of minority communities or women or LGBTQ folk. The one distinction I see between those movements and the disability rights movement is this: The outgroup allies in those other movements are, as a whole, not the parents of the direct actors. Women working on behalf of women's rights didn't first go through a childhood of their parents working in a defined population on behalf of their rights. African-Americans didn't go through a childhood of, say, white parents and future allies arguing with schools or government institutions on their behalf. In those movements, the allies start on the sidelines. The investment is different, the motivation is different. In the disability rights movement, parents fight on behalf of someone who is (often), quite literally, a part of themselves. Their starting point is not the sidelines, but the center.

In other words, involved parents in the disability community have a different sort of investment from these other allies for these other movements. That investment makes it more difficult to draw clear lines between the parents and the direct actors. Rather than being a part of the community out of choice, out of interest in righting a wrong--although surely that is part of it--they are a part of this community because they are literally part of its family. In the disability community, before a child can ever speak for himself or herself, that child's parents speak on his or her behalf. Parents spend years advocating on behalf of their children--disabled or not. If the child has a special need or disability, that advocacy is often a pitched battle with society and its institutions and expectations as the foe.

So, unlike those other outgroup allies who join in civil rights movements because they've seen something wrong, parents are directly, legally, vocally, and (often) genetically responsible for the people who will someday be the adult voices of that movement. That's a different dynamic completely and may explain in part why the best-intended parents feel so cut out or defensive when the direct advocates in the community view them as allies rather than as direct actors, as well. Unlike, say, a white ally of a minority civil rights movement or a male feminist, parents in the disability community have (often) been invested in specific members of the group since their birth and have (often) been fighting, sometimes tooth and nail and with much anguish, for the rights of that specific member specifically because of the special need or disability.

But wait, you say. What about the LGBTQ community? They had parents who often fought on their behalf. And I say, sure, and the PFLAG model is a good one. But here's the thing: Sexuality isn't something one manifests at birth. It's rarely something we solidify before puberty, if even then. Yes, parents who become aware of their child's sexuality can engage society and institutions on their children's behalf, just as parents of autistic children can, but that fight for autism parents begins much, much earlier, indeed often before their child can speak, read, or write for themselves. For many autism parents, it begins in their child's toddlerhood. It's been an investment in that child's entire life on behalf of that child's well being. In evolutionary terms, investment is a big word, something that takes energy and resources and is not to be taken lightly. This kind of investment isn't human-invented narcissism. Instead, forces drive it that parents often don't even know exist, forces derived from genetics and hormones and what we humans would call love.

It's hard and always will be for any parent to let go, although all parents must do so someday in some way or another. I think that after all that parents invest in their fight on behalf of a child with special needs, it may be all the more difficult to stand back when asked so that the first-person voices of the movement--the people directly-directly affected--speak first, loudest, and freely. The child whose voice you hear or read isn't an unrelated member of the human family, someone whose rights have been crushed, someone whose argument for society to do the right thing is one you support out of your own sense of right and wrong. That person is, rather, literally your child. You are the parent who has been there from the beginning, involved not just because of right or wrong but because that child--no matter how old, no matter how able or disabled, no matter how independent--will always be your child.

From that perspective, it's not difficult (for me, at least) to see why some parents feel pain when they are told that they are allies, on the sidelines. In most civil rights movements, the second-person people whose rights aren't directly involved start on the sidelines. But a parent? A parent starts at the beginning, at the core of the family unit that consists of the parents and the child. For years, they are the source of everything that child is and has. For right or for wrong, for mistakes they make and things they've done well, the well-intended parents do it for the love of their child. As with any parent-child relationship involving a loving, well-intended parent, stepping away from that, sidelining yourself as the parent, is probably one of the most difficult volitional decisions you'll ever have to make. It takes a lot more than fighting off the tears as you leave a child's dorm room on the first day of college. It takes making yourself silent for the first time in your life, on behalf of your child, so that your child, now an adult, can speak with the voice of a movement.