What Does 'Independence' Mean in Life With a Disability?
When I was growing up, I heard a lot of talk about and was strongly encouraged to be independent as a blind person. There were lots of options put forward for how I could achieve this, such as using a cane or a guide dog for effective mobility, choosing which technologies to use for professional environments and even to how I should label appliances in the home. As I moved off to college, these questions, and the need to have the “right” solutions, only grew more urgent. I began to develop what I see now to be a rather unhealthy state of mind; I believed if I was not doing every activity well and independently as a blind person, then I was casting a shadow over all blind persons everywhere. I felt I had to be at the top of my game so the sighted world would realize that blind people were just as competent in every facet of life.
I’ll never forget one moment that typified this way of thinking. Shortly after I met the man who is now my husband, he proceeded to do something I viewed as a major problem. He held the door for me. Rather than seeing this for what it was, a kind gesture by a gentleman, I saw it as an affront to me as a blind person. I snapped at him because I didn’t need him to hold the door. I was totally capable of holding that door! How could he think so little of blind people as to think they needed help opening doors?
However, as it turned out, he wasn’t even thinking about my blindness at that moment; he was just being a nice person. My blindness wasn’t even on his mind. I was the one obsessing over it and dragging it into the scene when it didn’t even need to be an issue. I’m so grateful that this attitude didn’t scare him off. We’ve been married for over 10 years now, and I can’t imagine my life without him.
Needless to say, this is an exhausting way to live, not to mention utterly untenable for any length of time. As my door story shows, it often caused me to be the one making an issue of my blindness, making it the center of attention. This is ironic, as during these years of my life, I often complained that people always made such a big deal out of my blindness. Now that I have children and am in my late 30s, my perspective on this whole topic is changing, I believe for the better. I’ve been thinking through questions regarding this whole concept of independence, and I think this is a conversation we could all benefit from, no matter what issues we are dealing with in life.
It seems to me the best place to start is by asking: What exactly do we mean by the word independence? Are there only certain prescribed methods or ways of achieving independence? If so, who decides what these standards are? Who gets to make that list? Does being independent exclude all help or support from others entirely, or is assistance from certain people (close family, friends) allowed?
For quite a long time, I thought of independence as needing to be utterly devoid of assistance from others, particularly sighted people, for it to truly count. In other words, I could lose my independence card if I accepted help or didn’t take every opportunity to show the world I was completely capable as a blind person, even if accepting help would be more practical and efficient. This is the most drastic way my perception has changed; I now realize that accepting or even seeking help does not in any way disqualify me from being an independent person.
I have come to see independence not as a list of approved ways or means of doing tasks, but as a flexible system that can and should change depending on life circumstances, support networks and financial situation. The former definition can easily become so rigid that if you aren’t getting through life using this strict set of rules, then you’re not really being independent. This latter understanding, brought to me by motherhood among other experiences, allows for a less stressful life and more positive view of myself and others.
In my college days, I saw things in tiers or levels of independence. In my undergraduate school, there wasn’t a good public bus system and walking was very difficult, as it was not a pedestrian-friendly town. I utilized paratransit services to get where I needed to go. However, when I moved to another city for graduate studies, I walked everywhere and used the public bus system. During this time of my life, I viewed myself as being more independent than I previously had been; I was doing more on my own and needing others less and therefore that made me a better example of a capable blind person. However, this was not accurate. I still accomplished everything I needed to in my undergraduate school; I successfully bought groceries, went to classes, attended my violin lessons etc. The way I got there shouldn’t have even factored into my formula of independence measurement. I had no right to assess myself or others for how I or they got their tasks done, all that should have mattered was that the tasks were completed.
I am raising two kids with my husband; I homeschool and am the primary caretaker. I do all the household tasks, such as cooking, keeping the finances, making the needed doctors’ appointments, bathing the kids, laundry etc. When we need to go somewhere, such as the doctor, church, kids’ gymnastics or piano lessons, my husband drives us. Does this mean I am not being independent, because I don’t wrangle the kids and myself onto the city bus, which would take twice or triple the time to get there? Am I taking the easy way out by letting my sighted husband drive us? Would I be more independent if I hired a driver instead of relying on my husband?
A few years back, when my daughter first came home, my husband was at a meeting. She started having stomach issues and did not make it to the toilet in time. There was feces on my floor but I didn’t know exactly where. So I called a sighted neighbor. She came over and within five minutes helped me clean it up. Was I not being independent because I asked for help instead of searching for the mess myself and most likely only finding it after I had stepped in it, which would have made a bigger mess?
The point is, I am still getting everything done that needs to get done for the successful management of my house. The methods I choose to use should not be the measure of whether I am independent or not. I think reshaping our views on independence would go a long way to simplifying our lives; it certainly has for me. I have even found that accepting help from family, friends or neighbors allows me the chance to get to know people better. It strengthens my ties to my community, and I have been able to be of help to others as well, including sighted people.
We all need each other. No one is truly and utterly independent, needing no help from anyone whatsoever in their life. The context of family should remind us of this, and there is no shame in it. In fact, it is freeing.
Getty image by Oleg Elkov.