Coming to terms with a disability can be extremely difficult. As we grow, we learn to take pride in simple things like mobility and often don’t acknowledge what a luxury this is until it is taken away from us. Simple everyday tasks suddenly require a Herculean effort.
Humility is the first lesson that we learn. The “super crip” ideology is one that is very dominant in mainstream discourse. The news continually highlights those that have “overcome” the challenges of a disability thereby suggesting that those that cannot keep up with the able bodied are too lazy to attempt to get by. The differently-abled are often seen as an inconvenience, or as seeking special privileges that are not really necessary.
Until one is suddenly faced with the realization that a simple walk to the store is impossible, or that making a cup of tea is the equivalent of running a marathon, one cannot really comprehend the daily lived experience of a person who must negotiate an ableist world. Asking for help is seen as giving up and the disabled are often encouraged to display a strength of will that is superhuman. Not only must we deal with the limitations of our bodies, we must deal with the judgement of the able-bodied.
Having an invisible disability can often complicate matters even further. One must often prove to others that a disability indeed exists. This is humiliating. As we name off our various afflictions many are quick to offer some false “cure” that they saw on a late night advertisement. “Go and get yourself some goji juice and you will suddenly find no need for that wheelchair/scooter/cane.” Even though you live with your illness everyday and out of necessity have become an expert, there is always someone who knows more than you about your suffering and your pain.
Dealing with a disability can be an isolating experience. Those that you once thought of as friends suddenly become too busy to drop by or fail to understand when you are forced to cancel plans. Even a simple “how are you” is avoided, because everyone has their own problems and your issues are suddenly irrelevant. It can feel like the world is moving on and leaving you behind. We learn to hate not only the pain, but the way in which it is understood by others.
It is impossible to always be sweet and thoughtful when your body is racked with pain. Tempers flare even with those that you love the most. You don’t suddenly stop caring about people, but lashing out can sometimes be the only relief available.
Doctors notoriously under-medicate and treat those dealing with chronic pain as drug-seekers, even when they are aware of the health issues involved. Until one lives with a body that is literally screaming in agony, one cannot relate to how suddenly it becomes too much to ask to know a moment’s peace from the pain.
There comes a time for many when they are forced to turn to alternative treatments. Smoking marijuana or hashish can provide the greatest relief, but because they have been deemed illegal substances one risks imprisonment. Where is a pain sufferer to turn when the doctors refuse to prescribe the needed medication in the appropriate amounts and alternative forms of relief are unacceptable Pharmaceutical companies make profits as your liver struggles to deal with the narcotics that have been deemed “acceptable drugs”.
Superhuman is the identity that the ableist world would like the differently abled to own, so that it is not forced to make adjustments for those in different circumstances. Were these same standards applied to the general population there would be a rebellion. Asking someone to rise above difficult circumstances proves a lack of comprehension of how difficult a physical disability can be.
Being differently-abled is a lifetime condition for many. It is not like a cold or flu. Each day, one must find a way to negotiate a world that is determined to treat your identity as invisible. Small actions, like shovelling a sidewalk, can make a huge difference to someone in a wheel chair. People should furthermore stop assuming that someone is trying to scam the system if their disability is not visible, as well as finally realize that being home sick because of a disability is not like being on a permanent vacation.
Like everyone else, we want to live full and active lives. Having to face daily restrictions and battles for respect make it that much more difficult. When we add the insensitivity of others to our sometimes mind-searing pain, it is a wonder that we don’t give up.
No one wants to play “super crip.” We only want the opportunity to participate in the world at large, at a level that does not intensify the difficulties we already face.