Polio Place

Post-Polio Health, Volume 25, Number 4, Fall 2009.

Dr. Rhoda Olkin is a Distinguished Professor of Clinical Psychology at the California School of Professional Psychology in San Francisco, as well as Executive Director of the Institute on Disability and Health Psychology. She is a polio survivor and single mother of two grown children.

Question: "I recently attended PHI's 10th Conference in Warm Springs, Georgia, with my spouse. I loved every minute of it. However, since we were in unusual surroundings, he had to assist me more, and I could see how tired he was. He didn't complain; I felt guilty. We haven't talked about this, yet. Should we? Do you have any suggestions as to how to approach the topic? "

Response from Rhoda Olkin, PhD: This is a great question, because it incorporates so many aspects of disability into the one question. I often hear issues about gender, travelling outside one’s own accessible environment, the way disability gets incorporated into the partner relationship, asking for and receiving help, and deciding how to expend one’s precious energy. So let’s tackle these as best we can.

First, women have trouble asking for and accepting help. Studies on gender differences when a spouse incurs a disability indicate that when the male has the disability, women will try to pick up the tasks that he vacates, but when the female has the disability the male will hire help. Perhaps males have the right idea? There is a reason why depression in females is twice as common as in males.

Consider the tasks your spouse did for you. How would you feel if you were doing those tasks for him? Would you whine and complain? No, because doing these things -- that’s what love is.

Second, traveling often is a hassle for people with some types of disabilities. All of our issues of weakness, fatigue, and pain get brought to the forefront as we’re faced with more tasks in inaccessible venues. Then there are the annoyances of other people who don’t understand, crowded places with little room to maneuver, lack of places to sit or rest, etc. PHI conferences aim to be hospitable to people with disabilities. And still you needed assistance. Because that’s the bottom line – as people with polio/post-polio syndrome, we need assistance more than other people might, so we’d better get used to it.

Third, your assistance was from your uncomplaining spouse. You felt guilty. You two didn’t talk about it. Should you? Yes. The best time? Before the trip. The next best time? Anytime. Having trouble starting? “Hon, you do lots of things for me and for us. When we travel, I notice you have to do even more, and sometimes it tires you. I can’t help but wonder if you would tell me if it was too much?”

There’s your opening; after that you’re on your own. Just try to believe him when he says he doesn’t mind, and remember that your guilt is yours to deal with, not his to make it go away.

Would we ourselves choose to be people with disabilities? Probably not. Would our partners choose for us to experience pain, fatigue and weakness? I would guess not. But this is the hand you (the collective you, i.e., both you and your partner) got dealt. Trust him to make decisions that are wise.

Let me relate a personal experience to illustrate. Recently my two siblings decided to visit Australia without me. I was hurt, but as I thought about it, I realized that a trip to Australia with me is a whole different experience for them. Let’s face it, I can be a pain – from the whole airport extravaganza of going through security in a wheelchair to finding accessible transportation to hotels with accessible rooms to accessible restaurants, and all that is before we even talk about my reduced energy level. So although there are things they would never do without me, every once in a while they choose not to include me.

My task is to (a) accept that this is wise for us overall in our relationships and to try not to be hurt, and (b) accept that when they do include me they know the drill and are willing to help me for the privilege of the three of us being together. Your partner also wants the privilege of being with you.