In response to my post from yesterday Night Owl responded with quite an emotional comment. If you remember, I had written about the power of 'no' and about teaching people with disabilities to say 'no' even when, as people with disabilities we live in a world where other people's 'nos' often count for more. (An award for you if you followed that sentence right the way through.) Night Owl then responded by talking about how her sister, who has a disability has all the power - and is given that power by how she use's her disability. After you read what she said, I'm going to take the opportunity to respond:
But my sister is completely addicted to power and she has every single person in our house under her complete control. And while I'd like to say this doesn't matter, we are all older than her. I'm not saying that the older you are, the more power you should get though. Just, if it was equal, it would be nice, you know?
If she says no, that's what goes. If she says yes, that's what goes. No one else has an opinion. No one else has any say.
Like, I was drawing the other day, and she saw me. But then she suddenly had this need to see all of the sketches in my drawing book, and some of them are very personal! Plus, I was busy drawing! So of course I tried saying "maybe later because I'm drawing now". But she just grabbed it and ripped some of the pages. It's like I didn't even have a choice, even though it was my sketchbook, and my sketches, not hers. :(
It just does not seem fair that she has all of this power. I feel like I can't even live. I can't do things I like because she might see me and for example, then I would have to go through the violation of her looking through my private stuff... I understand that she has a disability, and so we have to be nice to her. But still, I need some things to be my own and not hers. :(
I feel like a really bad sister for saying this and feeling this way. :(
Night Owl, let's get what's really important out of the way first. You are not a 'bad sister' for having honest reactions to the behaviour of others. In fact your reactions are precisely because something is seriously out of whack and your instincts are telling you that things need to be changed.
Many years ago I did a workshop for couples with disabilities and one man said, 'As soon as they call you disabled they start taking things away from you ....' One of the first and most precious things taken away from people with disabilities are expectations, obligations and responsibility. The theft of these from children with disabilities has done incredible harm, particularly to those with intellectual disabilities.
Just because there is no expecation of learning does not mean that learning doesn't happen. You sister, forgive me, sounds like a spoiled brat, a behavioural tyrant and someone who needs to learn some discipline. I have often commented in my workshops to both parents and staff that we are raising a generation of spoiled brats who have few demands and fewer expectations. I fear that individuals with disabilities who do not learn some basic skills in relating during their formative years are destined to live lives of utter loneliness.
Friendship is a skill.
Do you know what research says is the most important social skill for the maintenance of relationships? Reciprocity. The ability to give and take, the ability to concern one's self with another's needs, the ability to suppress what one wants in respect for what another wishes. This is a highly complex skill that is so easy to teach. Without this skill - the likelihood of having friendships drops to almost zero, the likelihood of being loved disappears. Hell, the likelihood that any PAID careprovider will provide with care is startlingly diminished.
I often have people say that someone in their care doesn't need to come to a workshop on the word 'no' because they use it all the time, because they already control everything or because they can say 'no' but can't hear 'no'. I am saddened by these remarks. Firstly, my workshops are about preventing abuse - and abuse can happen to anyone with a disability no matter their temperment or temper. Secondly, these are precisely the people who don't know how to say 'no' ... using 'no' all the time demonstrates the inability to discriminate, being the person constantly in control demonstrates a complete lack of reciprocity and not being able to hear 'no' places the person in a position of vulnerability and danger.
Night Owl, I hope you don't mind that I pulled your comment out to respond to in a blog all by itself but I felt that I had to, your emotions were quite raw and entirely honest. I didn't find your attitude unkind or your concerns immature. But now I go further and want to respond to a single line of what you said:
I understand that she has a disability, and so we have to be nice to her.
Um, yes and no. Disability can take a bit more understanding, true. But what would be nice is if your sister was given the respect of expectations to relate as a mature adult. She needs to learn, or in this case unlearn, many things. You are her sister, she needs to respect you and your boundaries, she needs to learn to show you love and care as much as she expects you to show love and care. She needs to learn to be an equal part of a family - she doesn't always get the larger slice of pie.
So please, for the health of your family and the future of your sister. Sit down and talk, all together about how you all need to change to relate better and more positively with one another. Ensure that your voice is heard. And if other's won't respond with raised expectations ... then raise them yourself between you and your sister. This means that there will be lots of sparks and tears of frustration. But out of those tears will come learning, and out of that learning will come ... perhaps ... someone a little more loveable.