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A friend recently conducted an ‘interview’ with me, as part of an assignment for their Master’s Degree. I was given a list of 33 questions to consider, one of which I answered on a previous blog, the topic of which had a great deal of impact on my life, as does this one, ‘how has your independence and sense of self worth been affected by your disability?’

This is a topic I really struggle with. I think, having worked within the disability community, it’s a topic most people with disabilities struggle with.

Independence is something we are all encouraged to attain, and long for, as we’re growing up and maturing. Throughout all stages of childhood we are introduced to new tasks we are expected to accomplish independently. Each skill we acquire moves us closer to a sense of independence, the ability to complete tasks unassisted. Ask any teenager what is most important to them and it’s making their own decisions, coming and going when they want, having the friends they choose, dressing as they wish, not having to depend on anyone, etc. Once we achieve a certain level of ‘independence’ we are considered adults, able to live on our own and take care of ourselves.

Society considers it a ‘failure’ if one attains independence, but has to return to their family of origin for support, shelter, financial help. Society tends to measure an individual’s worth by how well they are able to sustain themselves independently.

Dignity is associated with Independence.

For me, personally, I have prided myself on being independent, since the age of 19, when I left home. It was just a fact that I had to find a way to do things for myself, as my single mother made it absolutely clear that once I was out of the house there was never any coming home.

My sense of self worth has been associated with what I could do for other people, therefore connected to my independence, as someone who is dependent on others can hardly provide care, service, etc., to others… or so I thought.

When I got my last round of diagnoses and the prognosis that I would lose the use of my legs in a few years, I was terrified that I wouldn’t be able to contribute to my family any longer, that I would become a burden, that I would lose my independence. At first, I was extremely depressed. I felt that all the hard work I’d done to maintain my independence was in vain if what the doctor suspected proved true.

I went through a period, after my initial round of diagnoses, of deep depression. I was in a great deal of pain and my doctors were searching for the right combination of medications to alleviate some of my suffering so I could function in some capacity, to lead as normal a life as possible. I found myself feeling shamed, numerous times, by the inconsiderate and unsolicited opinions of some family members, who thought it their duty to critique my housekeeping, weight, behavior and overall health.

Though there were many comments made, both directly to me and indirectly to others, about how I was letting everything go, how I wasn’t doing my ‘share’, neglecting my responsibility, no one ever offered to help me, no one showed interest in knowing what my health concerns were, all they could do was criticize.

I found myself pushing through the pain to do things I knew I shouldn’t be doing. I was struggling with the changes my body was experiencing as a result of my diagnoses, having trouble accepting what was happening to me, I convinced myself, for a time, that if I just ignored the pain, ignored the emotions I was experiencing, and pushed through to be who I always had been, do what I always had done, that everything would be all right. In effect, pretend there was no disease in my body, pretend my feelings were unimportant.

I ran errands, shopped for groceries, did the housework, did all the lawn care, cooked all the meals.

I went back to work, pushed myself to be ‘normal’, whatever that is… to go to work, to ignore the pain and for a time, I was able to do it, but there came a time when I was in a car accident and the tests that followed indicated that I had 5 new diagnoses. I was experiencing a new kind of pain, something medication wasn’t addressing. I found that I couldn’t stand for any period of time, I couldn’t walk more than a few dozen feet without pain and doubling over. I experienced pain when sitting idle for prolonged periods of time and pain when lying in bed for more than a couple of hours at a time. Things progressed rather quickly and it wasn’t long before my doctor prescribed a power chair.

At first I was very depressed, that all my hard work, my ‘pretending’, the ‘mind over matter’ approach I’d taken hadn’t worked and here I was, actually, in worse condition than before, more than likely stressing my body in ways I never should have. Everything started falling apart around me. I lost my job, we had to move, my husband had to take on a second job to make ends meet and things weren’t getting done around the house because I wasn’t able to do them and he wasn’t here to do them. I needed help going for groceries, my husband had to run errands on the way home from work, I had to limit the yard work I did, needed help walking from the car across a parking lot, couldn’t ‘do’ stairs any longer.

I looked into the possibility of qualifying for ‘Attendant Care’ services, as they provide assistance with housekeeping, cooking, personal care, etc., but discovered that my husband’s income would preclude me from utilizing this service.

My estranged sister was here one day, shortly after we moved, telling me that I needed more help than I realized, that I needed help with housecleaning, that I wasn’t a very good wife, wasn’t being a very good mother, which infuriated me, as she has never been married nor had children, she hadn’t been part of my life for 7 years, therefore I thought it was really out of line for her to offer her unsolicited opinion of my ability to fulfill my responsibilities. I got very angry. One day when I was here alone I looked around the house and started to think about how I could adapt the work that needed to be done, so I could do things from my power chair.

I had taught ‘independent living skills’ to others with disabilities, it was time I pulled myself together, accepted my conditions and utilized those skills myself. I managed to figure out different ways to accomplish the tasks that needed to be done. There were products on the market, not intended for use specifically by people with disabilities, but that mitigated the effects of my disabilities, such as the Libman Green mop (which eliminated the need to drag a mop and bucket around the house) and the Swiffer Duster Extender (which allowed me to reach areas too high for me to dust from the seat of my power chair).

Over time, I adapted my surroundings to meet my needs. I now do all the cooking, cleaning, laundry, pet care, etc., and am able to take care of my home. I’ve found ways to adapt yard work so I can assist in keeping the outside of the home well kept.

The more I was able to adapt and accomplish, the better I felt about myself, the more I felt like I was contributing to the household, holding up my end of the responsibilities, being useful, and the less depression was a factor. I feel much better about myself, knowing I’m able to do something meaningful, to be an active part of my family.

Taking care of the house, walking my dog, feeling good enough about myself to go out and practice photography, have become ‘supports’ for my mental health, because Independence, making a contribution, shouldering responsibilities are directly linked to self-worth, self-esteem and having a sense of independence.

I won’t say that I no longer have ‘self-worth’ issues, that I don’t question my value from time to time, nor will I say I don’t struggle sometimes with things I simply can’t do and need to ask for help with, as I am a work in progress, identifying issues of concern, looking for ways to mitigate the issues and then implementing them. I still think about things I used to be able to do and mourn the loss of those abilities, I still sometimes feel inadequate when I need to ask for help, but I am learning that my worth is not in what I can do for others. It is not in what I can do, but in how I overcome obstacles.

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