Nancy and George Mairs were interviewed by Dale Bell.
Nothing is straightforward.
Confinement is a curse; confinement is a blessing. Oh I hate the limitations. There are specific parts of limitations that I especially hate. I was always a walker, and I just miss being able to get up and take off and walk somewhere. Probably the greatest source of pain has been that I can't be with my grandchildren the way I want to be. You know, I can sit and look at them, but I can't pick them up, I can't cuddle them, I can't run around after them, I can't take care of them.
Interestingly I've started doing it in dreams. I've started dreaming about them a lot as though, perhaps that was a way of acting on my desires, since I no longer had a way of doing so in my conscious life so I could do it in my dream life. But it's a blessing also, because that very sitting -- I say I sit and look at my grandchildren, that way I see them in a way that perhaps nobody else does.
You know, if things are flashing by you, you don't have time to contemplate them and cherish them, you don't know that you're not doing it. And that's part of the reason why I refer to people that other people may refer to as able-bodied, as non-disabled. Because they lack disability. They have a whole element in their lives that they lack. And I have that element in my life. Because I wasn't born disabled, I also have grounds for comparison. I started my life as a non-disabled person, and I know my losses very sharply -- very painfully -- but I also know my gains.
I don't know whether my relationship with George is unique, because I have no grounds for comparison. In other words, every relationship is by definition unique. But I think there are some unusual aspects judging from my observation of other people's relationships. And I've often tried to characterize it without making it sound ideal in some way. It's ordinary. It's just the way we are. Other people however, tend to respond, well, very warmly to it; as if they took reassurance from it; as if they took strength from it.
Although my wedding day is sort of a blur, we must have pledged to love and honor each other, because that's in the traditional marriage ceremony. I'm sure that I at least, I can't speak for George, that I had no idea what I was pledging to do. I wonder if anybody ever does.
When you wind up requiring personal care, then I think it's easy to fall into a pattern of thinking, well, George is an extension of me, and should know what I want, what I need, when I want it, when I need it, and I do fall into that trap regularly, and I have to stop and remind myself George hasn't that obligation. So I suppose that for me honoring him, is backing up and looking at him as a person. As not me, or a part of me but as a wonderful, separate being.
I mean, to be as helpless as I am, means that it would be easier to die. It would be easier for everybody, if I just died. If we're talking ease, and in our society ease is a very great value, for it to be easy. If they get hard, tough, then we think something's wrong. There's something sick about it, there's something the matter and we have to do something to make them easy and comfortable again.
Well, if I want to make things easy and comfortable for everybody, the only thing I should do is die. And having George participate in my care and having other people do the same, calls me into life. It says, despite your losses, despite your limitations, you belong here with us and we want you to stay. We want you to stay enough that we're willing to participate in the labor that it takes. That's perhaps the fundamental of caregiving -- to enable another to want to be in the world. Not just enable them to be, but to enable them to want to be in the world when it would be easier not to.
Historically, I'm depressive, but I'm a suicidal depressive. And there have been times when I've wanted to be dead, and several times when I've tried to be dead. And I'm pretty glad that it didn't work, most days. Most days I'm pretty glad to be here.
I think all the time about rights for the disabled. Often not in a political sense. I've been an activist on issues of peace and justice in general, but never have focused in upon disability rights exclusively. I do however, serve on the Board of the Arizona Center for Disability Law. And that does a great deal of work towards furthering employment rights and housing rights for people with disabilities. But I think what I'm good for more than anything else is being in the world in a disabled form and therefore confronting the world with its inability to deal with me.
For instance I go in to see my doctor, let's say. There's a sign-in sheet. I can't sign in on the sign-in sheet, because the counter is about this high, and the sign-in sheet is on top of the counter, and I can't reach that high. I can't see the person behind the counter to tell that person that I'm here and need to be signed in. But what I can do is shout up, "there's a person down here" and then a little head peers over and I think I have, I hope, made my point, that there are persons this high and at least one of the counters should be cut down to the height of my waist and nobody else's waist.
That's become built in to who I am -- to be open about my disability and willing to remind others even at the risk of embarrassing them -- and they do tend to get very embarrassed if they do something heedless. But why should they be embarrassed? Why should somebody expect to know something without experience? It's not like they're dreadful people that it never occurred to them that the counter was too high. They should hear me when I tell them that the counter is too high, and respond by lowering the counter.
So one of the functions I can serve is help people to see that there are angles that they may not have considered. An extra vision. An extra perspective that they haven't had occasion to know yet, but that they might have occasion to know. That of course is the source of the resistance, I think, is in order to be open and accommodating to disability you have to accept the potential in your own life, and most people are too terrified to do that. They resist it; it will never happen to me.
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