Six Rules for Living with a New Disability

By Katherine Schneider

(Excerpted and expanded from “Occupying Aging: Delights, Disabilities and Daily Life”

(Available from Bookshare, Amazon, and in Kindle format from Amazon)

A consultation with an elder who is going blind prompted me to expand my rules for assistive technology into six rules for living with a new disability. As with all rules, there are exceptions, and rules are easy to give and hard to live.

1. It costs more, takes longer, and requires more planning to live with your new disability. If you need to arrange a ride to the store for grocery shopping, you may keep a running list of needs so you don’t have to ask too often. The days of a quick run to the store for an item you forgot are gone!

2. There’s a huge learning curve. You are a baby in this new life, so don’t expect the same results when you do a familiar task. Those muffins you’re used to effortlessly making may look better and take less time if you make them in a mini-loaf pan instead, if your vision is failing. They’ll taste just as good!

3. Gizmos, adaptive tech gadgets, etc., are great, but they will not “fix” your disability. You can use an IBill reader or an app on a Smartphone to denominate your paper currency, but it’s faster to just ask someone. In 64 years I’ve been cheated only once.

4. Some people, be they friends, family or professionals, will “get it” and be helpful. Some you can coach into responding well and some you can’t. The ones who will never get it may be wonderful friends anyway. When they keep moving your cane without telling you, just remind yourself, “They don’t get it, and I love them anyway.”

5. Go ahead and feel good and sorry for yourself. Throw a pity party. Then when you get tired of it, get up and move on.  “Abapita” is a phrase in the blindness community meaning “Ain’t blindness a pain in the anatomy.” Sometimes it truly is.

6. There are positives of having the disability, but it will take a while to find the pearls. Remember, it takes a grain of sand irritating an oyster plus a lot of calcium carbonate secretion for an oyster to make a beautiful pearl. Having the company of wonderful guide dogs for 40 years, getting to know amazing people who originally reached out to help me, and some of the funny things that have happened because of my blindness are some of my personal pearls. Find and share yours, please!

Featured image: “Rangiroa (pearl farm)” by Olivier Bruchez is licensed under CC BY-SA 2.0

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