When my daughter with Down syndrome was first born I feared there would be a gap between us because of Down syndrome. I read a book which pointed that those of us with children with disabilities different from the ones we might possess were separate from us. I imagined in those early days gaps and fissures that I might never bridge. She would see the world different from me, vastly different in so many ways, and in those days that difference seemed insurmountable. Over the last four years, however, I’ve come to see that the differences between my lovely girl and me are not so unbridgeable.
But this does not mean that there is no difference between us. There are spaces, yes, just as there are spaces with my other children. We are involved in a dance through time involving coming together, moving apart, switching to new partners, and returning even if only for a brief caress of the hand. We all struggle at times with understanding one another. They will have experiences that I will not experience. Sometimes even experiences that I won’t understand.
But because I can feel, I can at least reach across those gaps and take a hand. Perhaps even build some bridges.
The thing that amazes me the most about my children is how we are the same and different. We are not one more than the other. We are both, often at the same time. How could it be otherwise? They are complex beings of neurons, cultural construction, and being. We have been raised in different places, in different ways. We have separate interests and friends and experiences. But then again we are also from the same genetics. They are shaped by me as I am shaped by them. So we flux into becoming through both this sameness and difference. But we are not Other. Not to each other. Nor should we be to the world.
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When I think about this complicated arrangement, I can see how it applies to a broader political world (all is politics after all from what happens in my small home in Georgia to the floor of Capital Hill and beyond).
We are all the same in our humanity or perhaps I should say in our being because I don’t think we get a free pass on the torture of animals or the destruction of our environment.
Similarity is an important political tool. It allows people to gather in solidarity.
My daughter is like those with Ds not because she is a stereotype but because she faces a future which may contain abuse, inequality, and ableism. The key in this similarity is that I want it be to a choice for her. An identity that she can choose to dance with in such a way that it helps her to fight for her right to take up space on this earth. If she desires to have such an identity, I hope to teach her to have pride in it and not shame. But this does make her like everyone with Ds. She is not a label. She does not get to be the “Down syndrome girl” in a way that limits her to having to always be happy, to liking pasta, to loving music, to having a 100 Watt smile that lights up the room. If she has these things or likes these things, it is because of her not because of Down syndrome.
Most importantly, I want her to realize that in the ways she is different she is also alike other groups in her community and her shaping are always more than just this one thing. I want her to have the right to the complexity of sameness and difference that comes from being human.
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The difference of my child does not lie in some kind of “mystery of her chromosomes.” The difference is that which lies in us all. The differences that comes from who our parents are, who raises us, the experiences we have and how we invest in those experiences. Our subjectivities are a complex thing that are formed in the relationships we have with other people but they are not all the same. The same experience is going to shape two people differently. What is the same is merely the experience.
I know that my children are different and thus it becomes imperative for me that this difference be respected because at the same time we are the same. This difference is really the same as yours and as mine.
Their difference has all too often been loaded with labels and meaning over which they have not had a say. The time has come for them to take a place at the table, and I hope to raise them to take that place with no apologies; to just not meekly move on until someone offers them a seat at a smaller table. And then perhaps kicks them from that table to an even smaller table until eventually there is no where left for them to sit.
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[Feature Image: A collage of various children with down syndrome in black shirts. Flickr.com/waldopepper]