Disabilities and the Fight for Independence

For someone with a disability, the word “independence” brings to mind far more than thoughts of government, war, and celebrations of freedom. Independence, to us, often means things as simple as opening our own doors, carrying our own groceries, or feeding ourselves. The fight for independence is grueling, confusing, and never-ending when one’s body won’t cooperate.

My aunt fondly used the word “bull-headed” to describe my attitude toward accepting help when I was little. I felt that if I was able to do something, I shouldn’t let someone else do it for me. My parents did all they could to create an environment that didn’t hold me back. They paid close attention to what I was/was not capable of doing on my own, and did their best not to bail me out when I was just being lazy. They met with each of my teachers through school to let them know how much help was good for me, and how much was too far. They allowed me to do things which were physically dangerous for me, but important for my sense of self-reliance (i.e. bike riding, travel). My parents took an active role in the fight for my independence.

It took many years of growing and maturing before I came to the realization that people generally didn’t offer me help out of a sense of obligation or pity; they just wanted to make my load a little lighter. So, gradually in my teenage years, I started learning how to allow help, even when it hurt my pride a little. I began to find the delicate balance between maintaining my sense of independence, and allowing others to be a blessing. There are times, however, when the line is unclear. I can’t read minds, and sometimes I feel a person is stepping in to save me from myself. I feel the person might think I am unable to complete whatever task I’m attempting, so they have to save me from embarrassment. Other times, I have politely smiled and refused someone’s help, only to have them take whatever I’m doing away from me and force me to accept their assistance. In these moments, I have to take a deep breath and lay my hard-fought independence down for a time, in the spirit of kindness.

My relationship with people who don’t know me well is nothing short of conflicted. Many of them don’t know if they should help, if they can ask questions, if they should crack a joke about my being disabled, etc… And I am constantly searching for the gracious thing to say, and kicking myself for not saying it. I want to make everything look easy so no one feels uncomfortable, or that they need to help, but that is impossible. My day IS struggle. Many activities are painful for me, or take me twice as long as the average person. I can’t expect good-natured people not to want to help. But if I don’t maintain some self-reliance in this world, who am I? Nobody wants to surrender their freedom. The deepest drive of my personality fights for independence… I have to throw it a bone now and again, right?

People seem to look at my life and be surprised at the things I’ve managed to do on my own. They are amazed at how I independent I’ve become, but this independence I enjoy has never been easily won. It is a constant emotional and physical battle. Feet were not made to work like hands, and undoubtedly, I am putting all kinds of strain on my body that it wasn’t designed to handle on a daily basis. But, I’ve found freedom to be worth the fight. So I’ll let my body rest when it can and enjoy all the good things I’ve been blessed with.

Whatever level of independence you enjoy today, be thankful. It is a gift.

 

2 thoughts on “Disabilities and the Fight for Independence

  1. Baseballsbutterfliesblessings says:

    Sarah –
    I loved this post.  As a mom of two children with disabilities- I am constantly finding myself walking this tightrope too – it really is a balancing act…. figuring out people’s intentions, how much help to accept, when to encourage independence in my kids and when to teach them to accept or ask for help.
    Thanks for your thoughts and perspective on this –
    Katie
    (Will & Ellie’s mom)

  2. Deborah Amend says:

    I agree with Sarah!  This is a great post, especially for a mom to read!  It is a tightrope walk on helping and teaching independence.  They need to be independent, but I also don’t want to squelch genuine acts of kindness that lead to friendship.  I have finally realized it will be a lifetime of learning for them in this area.  My oldest (who has one arm and uses a prosthesis to walk) asked me one time if I thought she would ever be able to live alone.  I really didn’t know the answer to that, although I suspect she could make it work.  But then as I thought and prayed about it, I realized that, for most people, living alone isn’t any special or good.  Good designed us to be in community with each other, so needing to live with others is not a bad thing, in fact it could simply just push us back more towards how God originally designed us to be.  So, there is some kind of balance that seems a bit elusive.  

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