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Do you ever wonder as a person totally dependent on others for your basic needs what it would be like to be on your own? You could live by your own rules instead of those of someone else. If you wanted to stay up or out all night, have strange friends, drink champagne at midnight or decorate the walls with palm leaves and coconuts, you could. What bliss!
But how can you? How could you manage away from your family?
Well, it can be done. Perhaps the experiences of two other young women and myself will help you decide whether living on your own is possible and desirable for you. It is something that every disabled adult should think about, for there is always the possibility that such a way of living may one day occur by necessity rather than choice.
First you must decide how much help you need. The three people written about here all rely on respiratory equipment and therefore all feel a need for the 24 hour presence of an able-bodied person. Some disabled persons, however, can get along with help only for the essentials.
Next you must determine how much help you can afford. Ah, here's the rub. Most of us have as full time helpers those who need or want a place to live. They are young girls who want to get away from their parents or older women without mates, dependents or their own homes. Because we provide them board and a place to live, a small salary is adequate. Hiring hourly help can be considerably more expensive.
Then, assuming you can afford one, you have the problem of finding a good helper. The lucrativeness of business and industrial employment puts domestic and nursing help at a scarce premium. You will be competing with inflation salaries on a fixed income. As for live-in helpers, most people have their own homes and families and don't want to leave them. Older women who might need a place to live often can't physically handle the work. Young girls soon move on.
Still interested? If so you just might be the type for whom independent living is most reward-ing.
One of the people in this category is Donna Graham. She lives in the Jasper House, 121st St. and Jasper Ave., Edmonton, Alberta, Canada. A victim of polio in 1953 when she was 24, Donna is a quadriplegic almost totally dependent on respiratory aid. Although she uses the chest respirator and rocking bed most of the time she can frog breathe and says, "Two hours wouldn't be a problem without air."
Donna is fortunate in that she has had the same helper living with her since she left the hospital in 1965. They were brought together through mutual friends. As her helper is older and unable to lift Donna, two friends put her into the tub for baths and shampoos. Two friends also lift her onto a stretcher when she goes out which is seldom, maybe twice a month. When she goes she is accompanied by a portable respirator.
Donna's attendant-friend has a day off every week. During this time a high school girl substitutes. When her helper goes out to play bridge two evenings a week, Donna arranges to have friends visit her. If there is shopping or other things to be done she stays alone, checked on via phone every half hour by another respiratory polio friend.
This friend, Connie Kowalski, lives in the same apartment block as Donna in Apartment #102, 9999 - 111th St. They got polio the same year, Connie at the slightly younger age of 15. Also a quad Connie uses a chest respirator, pneumobelt, rocking bed and bagger. She can breathe 15 hours by herself but does not like to be left alone for more than 15 minutes. The rare times this happens she calls on the phone companionship of Donna.
You can see how important security is when you're living alone and how these two reinforce it with each other. Access to a telephone is vital when you are disabled. Fortunately, phone experts can design almost any type you want and can operate.
Connie prefers younger helpers both for the fun of their company and the fact that they are better able to lift her from the chair to the bed. The average length of their stay is from 5 months to 11/2 years.
When she is in her wheelchair Connie oil paints, writes and reads. She manages this by having her arm in an overhead sling and a pen or brush taped to the inside of her first finger. A device for this sling is welded onto her bed and she is able to read while rocking.
In living situations where 24 hour attendant care is necessary you run into the problem of a lack of privacy. Conversations with visitors are inhibited by the presence or simply awareness of the nearness of your helper. In a small apartment there are few if any rooms to be alone with friends and the problem is intensified. In Donna's case, when a visitor arrives her helper disappears, an agreement that assures privacy.
In common with Donna and Connie I had polio in 1953 and live on my own as a respiratory polio quad. Unlike them I reside in a house rather than apartment, which means building and lawn maintenance as added responsibilities. I have learned quite a few things about house care and expense since my father died three years ago. Such as, the reason he had the furnace checked every fall was to lessen the chances of its stopping on the coldest day of the winter. That is what happened to me the first time I decided to eliminate the expense of the annual furnace check-up. If you can handle these extra challenges, houses are much more fun to live in than apartments.