The Independence Continuum

Immediately after my injury, I became completely dependent on others in all aspects of my daily life. Dressing, bathing, bladder and bowel care, eating, drinking. About two weeks after my injury, I remember the first time I was able to scratch an itch on my nose. Slowly, with the use of adaptive devices, I learned to use a fork or spoon to feed myself. Putting a shirt over my head was an accomplishment, but I still needed assistance fastening my bra. After my spasticity was under control, I could transfer in and out of my chair, but always wanted someone standing by “just in case.”

Nine years after my injury, I met Leslie Ostrander at the Ms. Wheelchair America pageant; I was representing Kentucky, she was there on behalf of the state of Georgia. Leslie was the first female quad I’d met who was independent in her personal care. I didn’t even know this was possible! Once I heard that I could learn to do some of my own personal care, I craved it. And slowly, very slowly, I was able to become more independent; not as independent as Leslie, but doing what my abilities allowed me to safely accomplish.

When I’m asked if I live independently, I answer yes.

  • I live in my own condo.
  • I work, drive, visit with friends and family and live a mostly normal life.
  • And yet I have help three mornings a week with bowel care and showering.

Merriam-Webster’s definition of independence is “the quality or state of not being under the control of, reliant on, or connected with someone or something else.” Yes, I am reliant on someone’s help, but I am not under their control. I am responsible for interviewing, hiring, and firing my personal care attendant – and I am in charge of the care in which they assist me. Therefore, I live life independently.

I believe that independence does not necessarily mean the absence of help or assistance. For the high level quad that needs assistance with eating or other activities of daily living, independence can be achieved through a power chair, assistive technology and computers, and having a good personal care attendant that will listen and follow through on helping with the daily necessities of life. Likewise, a person with MS may be dependent on a cane for stability while walking. While we may view one person as more independent than the other, these individuals are simply on opposite ends on a continuum of independence.

Leslie and I have discussed this issue many times. Although she’s completely independent in her personal care (and I’m insanely jealous), the help that I receive a few days a week saves me time and energy for other activities. In my situation, achieving complete independence (i.e., no help needed in ADLs) would actually lead to losses in other areas of my daily life.

Finally, as humans – abled-bodied or disabled – should we all not be dependent on each other? Maybe inter-dependent is a better, less psychologically-charged word. We all need the support, encouragement, and love of others. Individuals with disabilities are just as capable of providing these emotional needs as an able-bodied individual.

I choose to view independence as a continuum of basic needs being fulfilled by ourselves and those we surround ourselves by in order to live a healthy and active life.

Here are a few tips that you can build upon:

  • Start with adaptive devices. There may come a time when you will no longer need these tools.
  • Focus on the things you can do. A positive perspective can help you gain more independence.
  • Independence is about being your best advocate.
  • Abled-bodied or disabled – we all depend on each other.

Go out and enjoy your independence.

Jenny

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