Living with a disability is a lot like living with a secret. Sometimes it is an open secret, where it is apparent to most that you have some sort of impediment complicating your life. Depending on the severity and nature of the disabilitiy, the impact can be more than obvious. And, whether the disability is readily discernable or not, it always – always – carries a stigma with it. It can be intermittent or mitigated, but it is always a potential asterisk on your forehead.
Sometimes, even with enormous effort, a disabled person barely transcends that which gets in his way. It can even evoke pity or avoidance by folks too ignorant or scared to get to know the person, or even make contact with him – social OR physical. Such dehumanization can come from a lot of places: ignorance, disgust, apathy – even fear.
Sometimes, if the disabilty is not of a physical nature, or the person with that disability has learned quite well some coping strategies and/or is otherwise adept socially, the person actually becomes bigger and more vivid than his or her disability. Bravo to that person and good luck with a future that is hopefully as strong, as determined, and as bright as you are.
There is quite the broad range on this continuum. Again, it is a very cumbersome thing to speak to the whole of living with a disability, and as such, I’m only briefly scanning some of the demographics within the disabled community before I delve more deeply into the one I know most intimately, that one into which I myself happen to fall. I reveal that here, despite admonitions to avoid the first-person perspective, not to give this piece the character of a blog or editorial, but in the honest attempt at full disclosure, and to assert by *example* that the disabled person has nothing to hide, and nothing about his disability of which or for which to feel ashamed.
One of the strongest desires, and greatest pains, for those who live with a disability that effects their lives all day every day, is the unendingly desperate search for and struggle to find understanding, commonality, fellowship and empathy in a world that often seems callous in its mind-bogglingly unnecessary insensitivity to society’s “irregulars”.
Those are strong words, I know, and of course they are not intended to be an indictment of every non-disabled person in this world. But…but – they ARE meant to convey a level of frustration with *society’s* blindness to things that are ever apparent every single moment to we who have this extra (in the *best* of circumstances!) “thing” to manage. It is indeed usually quite unintentional. In fact, it is often something for which we who have these differences must claim some responsibility.
For sometimes, whether out of pride or just the fatigue of having to paint this picture for folks over and over and over and over and over again, we fall into a mindset of denial ourselves. Not so much a denial of the disability’s existence of course, but of our ability to do anything about it. Sometimes it even gets to the point of a sort of “laziness” or bitterness – where at some point, it is ever so tempting to just throw our hands up and say “That’s IT! I’m NOT going to explain myself – I’m NOT going to bring my adaptive equipment today!
I’m NOT gonna disclose this to my boss! I’m tired of arranging for note-takers and asking “permission” to record the lecture or staff meeting. I’m tired of having to write down absolutely EVERYTHING and then still forgetting or getting confused. I’m tired of being snickered at or given the eye roll when I ask for driving directions a third time that are supposedly “so simple, man!”.
I’m NOT doing these exercises, no! I’m NOT talking to that therapist and I’m sick of cleaning and fixing my wheelchair. I’m tired of replacing and spending money on hearing aid batteries or inhaler canisters. I’m sick and tired of seeing this and that doctor and filling these prescriptions and fighting that insurance company again and again and again! So, Mr. Wonder, still dealing with that blindness thing, eh? Sure you’re not just milkin’ it?
Exactly. Offensive. DIsgusting. Unbelievably insensitive. AND – actually pretty STUPID on the part of the person who would question this brilliant musician’s need for certain accomodations and reliable and competent assistance.
I’m tired of dealing with insensitive dumbasses who expect me to accomodate THEIR prejudice. I’m tired of having to explain, sometimes to no avail, why I need to do things a certain way – and NOT the way that this particular bully on that particular day wants me to. I’m WAY done with hearing “just try harder” or “you’re just not getting it”. And so HELP me if I have to endure that well-meaning but tiresome “chin-up” head pat, or that maddeningly and jaw-droppingly inept and insensitive “bootstraps” speech even *once* more! I’m DONE!!
But God help the person who makes my life more difficult than it already is….” – and so on.
One other aspect of living with a disability is this guilt and helplessness that can so fog your reasoning, concentration and mood. This same fiery rage that allows you to get up one more day and walk one more step and fight one more day’s fight, can at times bring with it a guilt over an anger – and yes, sometimes it is pointed spitefully and daringly at God Himself – that can overwhelm, and feel unjustified only AFTER expressed. It can be confusing to have to feel this need to apologize for feeling so – so ungrateful for a pain you just wish could go away for a little while.
Or for good. The BIG “for good”.
This is the truth. This is hard to hear, hard to see, and hard to write. But, this is a chasm that must be bridged not only so that the disabled can find and get the much needed help and understanding that is vital to living a full and fair and meaningful life. It is one that, when crossed, allows both regularly abled and disabled to give absolutely everything to this life that they can.
And it makes all the difference in the world between living with a DISABILITY…