What struck me about it all was how it was then (in the early 60s) okay to express that having a child like Betty was in a lot of ways very, very hard. It was okay to think of it as a tragedy, in a lot of ways, and for other people to feel sorry for the family. It didn't seem like people were told to see Betty as a blessing or as a treat from God for being good parents (although the family was very religious and did seem like very good parents). Betty was loved, but it was not presumed that she was somehow sent to teach everyone lessons in tolerance and love.
Today, I think there's a huge amount of pressure to think positively about disabilities. And that is good, in a lot of ways. I wouldn't want people seeing Janey as a tragedy, or people just shaking their heads and assuming that there's nothing that can be done for her. But in other ways, it puts a huge amount of pressure on parents. It isn't even politically correct in most cases to say truthfully that Janey is retarded. "Retarded" is a bad, bad, bad word. You can say "developmentally delayed" or "cognitively challenged" or terms like that, but the problem can be that no-one quite knows what you mean. I still think often of when one of my oldest friends, that doesn't see Janey often, was shocked when she realized how behind Janey was. She had equated autism with what a lot of people do---someone quirky and brilliant. And I said the bad word. I told her---Janey is retarded. I feel guilty writing that, like I'm being horrible. But it's true. It's a negative word, but why is that unacceptable? It's not a blessing that Janey has so much trouble learning. It's not a test, it's not a puzzle to be figured out. It's something that is wrong with her brain, and makes it very hard for her to learn. I don't see that as a positive thing.
If you do a quick read of a lot of blogs about disabilities out there, you can see the pressure put on parents to be positive. I think there's a lot that doesn't get written down. Or maybe I'm the only one. But I don't think so. I love Janey, I often delight in Janey, I find her fascinating and adorable and I in many ways love being her mother. But all that being sad, I have huge amounts of sadness, anger, discouragement, depression and frustration over how life with her is. This morning is an example---she screamed from the time she woke up, she fought getting dressed and her hair done with tooth and nail, literally, she kicked things around in the car, she ran away from me in the schoolyard, she tossed her shoes away as I tried to get her into her classroom. I don't feel positive about that. I feel worn out, discouraged, depressed. I feel those feelings for myself, and even more for Janey. I worry about her life. I despair when I think about her when I am someday gone.
There was so much about the past treatment of people like Janey that was awful. There was no special education, there was little understanding and life for the Janeys of the world was bleak. I'm certainly in no way at all wishing it was then. But I do wish it was still okay to not be positive now and then, to openly say "This is extremely hard. This is not fair to any of us". And so I'll say it.