The value independence plays in our lives can only be fully appreciated when you comprehend how slowly it is achieved and how quickly it can be taken away. Everyone around you has a different understanding of independence and I suppose people get to their new understandings at different stages of life for example a child starting school to an elderly person requiring never needed assistance. As our needs change perhaps so too does our definition. I think before my injury, my idea of independence was quite traditional and simple but now it’s very different from how I think most people would conceive it, but unfortunately it is what it is. Accepting and embracing this disability-community definition of self-reliance requires a major paradigm shift away from the physical aspects to focus more on the mental by embracing the larger role the mind plays in freedom from outside control or support, compared to the body. It is coping with all the responsibilities that come with life; managing finances, meeting deadlines, along with organizing and learning to co-ordinate the people who are assisting with daily challenges in order to live a self-ruling life.
Accepting help and that caregivers are going to be a part of your newfound freedom goes along way. Four years after his injury, I am constantly pushing myself but my stubbornness works for me and my approach to independence, but it might not work for others. Initially in my view of independence, I thought that I had to do everything myself. I still struggle with the balance of finding the fine line between doing tasks myself to the point of physical exhaustion and accepting help (and more importantly asking for help). As a quad, it is good to be ambitious, but it can also create a failure mentality if you cannot do something by yourself. Personally, even though time consuming it gives me more of a sense of fulfilment, knowing that I’m not reliant for some things. Like many quads with lower cervical injuries, I am still not quit at an attendant-free stage but I have reduced my daily care from 24hours while in the hospital to a maximum of five hours most days. I hope that with continued efforts it will become much lower with freedom from help a future reality. As I have gotten more mentally independent my physical has also blossomed with a general overall improvement in independence being experienced.
Comparing abilities and independence with other quads is common and can lead to questioning your own approach to such. Perhaps we put too much pressure on ourselves to conform to their standards, berating ourselves if they don’t work for us. Ultimately, our path must be conducive to ourselves as individuals because we’re all actually quite different as far as the amount of function we have. If it’s using a manual chair or a power-chair, use whatever enables your best to get around independently and make you feel “less disabled’. As mentioned in my other blog (Independence), the system fails so many people to be independent by not helping them to help themselves in terms of accommodation, equipment, access etc. and creating a mentality with little expectation that a person with a disability will live independently or establish a household of their own. But my advice is to remain strong and don’t fail yourself through your internal approach to independence.