My/His/Our Personal Place Of Despair
Warning: If you don’t like hearing about other people’s problems, don’t bother reading this.
My wife is guest-blogging this time.
Let’s see, where to start. Right now I’m in a very dark, very scary place. My husband is sick and out of work, I am sick and out of work, we both have disabilities and we’re rearing a child with an autism spectrum disorder, and some other challenges. We have her and ourselves on a gluten free, casein free, soy free, MSG free, processed sugar greatly reduced diet that includes vitamin supplements in hopes that it will lessen her symptoms and ours. It’s working for her and it was working for us, too, until recently. I don’t know what’s gone wrong, and I don’t know how to fix it. And even if I could figure out how to fix it, how would I manage it on our present income? We’re running to the edge of our money every month as it is. Eating this way is VERY expensive. We need to move to a cheaper apartment, but we’ll have to take ourselves off the supplements for at least two months to afford it. If we stay where we are, we’ll never be able to save any money to buy a house for our only child to inherit when we die. A child, who, as I said has multiple disabilities and needs a special expensive diet. This is only the tip of the iceberg for us.
I, because I am black, and disabled and my husband because he is black by association and disabled, have been subjected to a lot of racism/disability discrimination here in Norway instigated, for the most part by white women. I have no reason to think it will be different for our daughter since she also disabled and has more visible African ancestry than I do. We, my husband and I, have been accused of neglecting our daughter twice and reported to the barnevern (Child Protective Services) twice (BOTH reports were determined to be unfounded, btw) by these nice, helpful white women, who ‘only want what’s best for us’.
In one of these situations, a nurse even convinced a doctor, in the municipality we were living in at the time, to delay recommending our daughter be evaluated at BUP Nordland (The Child and Adolescent Neuropsychology Clinic at the hospital) and so delayed her access to medical care because she and he both decided my daughter’s delays were because I was hindering her development (which led to one of those CPS reports)-and everyone in the municipality from the doctor himself, to the director of health and child welfare services supported her, even after our daughter had been diagnosed! We changed our daughter’s diet, fought to get her evaluated at BUP, put her in whatever activities were available wherever we lived, but still we’re somehow neglecting her. And the worst of it is, that most of the people we spoke to or complained to about these women felt they were perfectly justified in treating us, or more specifically me, as though they thought I was lying/exagerating, and/or incompetent, and/or just plain crazy. Think about how you’d feel if you knew most people felt everything about you was suspect just because you weren’t white? I think about how you’d feel if you knew your child was going to suffer the same abusive treatment?
Even my husband’s family is guilty of some of this kind of thinking. They helped us move after all that nonsense up in Nordland, so I don’t want to be too hard on them. They are kind people who, unlike some of those other folks, do mean well most of the time. They however have real problem facing reality. In our case, it takes the form of wanting, almost demanding, that we paste a smile on and pretend everything’s all right now, so they don’t have to deal with the fact that Norwegian society has one set of rules for them and a different set for us. We don’t insist that they hear what they don’t want to, we just don’t spend a lot of time around them. We decided we will not participate in their “We are the people having a party in the living room, while ignoring the house fire in the kitchen, because house fires are too scary to think about’ mentality. So having almost no support here, not even anyone we can talk to without being patronized or risking further reports to the barnevern, we are seriously considering moving back to the U.S. in one or two years to be closer to my family and friends. They are people who have experienced racism and disability discrimination and therefore are willing to listen and support us in ways that John’s family can’t or won’t do. As scared and despairing as, in truth, we both are, we’re going face this and try to figure out what to do so we don’t leave our child unprotected in a mean, and two-faced world.