A mother came up to me once after I had given a talk, and hugged me and began crying. I thought that perhaps I had said something during my speech that had upset her, but as she began telling me about her son and his disability it quickly became apparent that she was not crying because she was sad, but because she suddenly was filled with hope. If you have never been without hope for any length of time it may be hard to understand how powerful a force it is, and how empty you can feel without it. The weight of it suddenly coming back into your life can be overwhelming, and that is what I think she was feeling that day. I want to make clear that it wasn’t anything I said that caused her reaction; it was her own strength of character and her flexibility of mind that allowed her to imagine a different future for her son than what she had ever previously thought possible. I have found that the general perception of what it means to be disabled is incredibly skewed; both by definition and scope, and the misconceptions that this causes can shape lives just as powerfully as the truth can.
What started this line of thought in the first place was while I was painting the other day my mind began to drift, and I started to think about who we, as a society, admire. Is it those who have never faced a challenge or had occasion to distinguish themselves in courage or ability? No, that just doesn’t make sense. I know the people that I admire most, the heroes that I had when I was a kid, people like George Washington Carver, Ghandi and Socrates (yes, even as a child I was a nerd), are those who had been tested by life; had been shaped by their experiences and learned from them, and through their words and actions influence and teach the rest of us what it means to live and act with humanity and dignity even when times are at their hardest. I think that most people would agree with that, but the odd thing is that the current view on disability would have you believe otherwise – that adversity and challenge weaken and mar a person instead of being the tools that build strength and character. How can adversity both be the building blocks of heroes, and also be the anchor that drags a person down? Hmm… I think this dilemma calls for a potato.
The simple potato was thought to be poisonous; to cause leprosy in fact, and during the famines in the late 1700′s people were starving to death right next to wagon loads full of potatoes. To make a long story short Queen Marie Antoinette wore a hat made of potato flowers, everyone said potatoes must be groovy if the Queen will stick them on her head, years later enter a clown and the golden arches and the potato’s world domination is complete. Did the potato itself change? No, but perception of it did, and that’s all it takes.
I have never been that concerned with being politically correct; once when I was the chairmen of a Mayor’s committee for People with Disabilities I used the word handicap once during a meeting, and one of the other members called me on it because I should have used the term ‘people with disabilities’ instead. They were absolutely right because words are the way that we learn about the world – especially for children as it is the dictionaries, thesauruses, and encyclopedias that give them their viewpoint of the world. Since ‘disabled’ is the preferred label let’s take a quick peek to see how it appears in the dictionary.
Dis·a·bled 1. crippled; injured; incapacitated; unfit
Synonyms: Helpless, powerless, wrecked, handicapped, confined, decrepit, weak
Antonym: Healthy, able
These are the words that shape our perception of what disability is so it is no wonder that there is such a misconception of what it means to be disabled. The books that shape our viewpoint of the world tells us that disability is the opposite of healthy – to be one precludes being the other. The global perception of disability seems to be that it effects only a marginal group of people; that except for a few unfortunate souls most people are unaffected by disability issues. The actual truth is that 1 in 5 or 1 in 7 people (if you are being extremely conservative) are considered disabled – that is to say 1 to 1.34 billion people on earth. Another way of looking at this is that there are more people with disabilities in the world than the number of people that inhabit the entire continent of Africa – from the tips of Egypt and Morocco down through the 45 other countries that create that super continent. If that number sounds high to you then please consider that perhaps there are a few things that you may not yet realize about disabilities, and the people that have them.
To say that someone has a disability is really to say that they face a continual adversity.
For instance, Somebody can look at my blindness or epilepsy and say, “Hey John. You’ve got a real problem.”
That’s true, but I have a million problems. We all do; life is full of them, and the decisions that we make to deal with these problems are what shape us and turn us into who we are. It is not a question of whether or not we are going to meet with adversity in life, the question is what flavor of adversity are we are going to have and how we are going to face it.
We have this idea that adversity is an obstacle that needs to be gone around; or we have to work our way through before we can get on with life. That any joy or achievement in life lies on the other side of whatever is restricting us, and not only do we need to deal with this barrier, but to ever hope for happiness or a full life again you must manage to remain as untouched and unscathed by the experience as possible. Everything gets put on hold until the problem goes away, but this means that a person with a disability is stuck unless they are able to dodge the problem in some way.
I reject this idea. It is inaccurate and makes dealing with problems much harder than it has to be. In a way; I am glad that I became blind; this makes more sense when you stop thinking about adversity as an obstacle, and start viewing it as an experience – something that you can learn from and grow from. I know in painting I have learned more from my mistakes than I have my successes. (To any collectors out there – I never make mistakes in the studio; everything I do is genius – To everyone else; I do some crazy things in the studio; I’m a curious person so I’m always trying new things and trying out new ideas) At least when I am having difficulty I know that I am pushing the limits and boundaries of what I am capable of. If things are easy then I am just coasting. I’m not saying that every moment should be a struggle, we need to rest and relax – it’s just that the times of rest are not necessarily our most productive moments.
When we understand that adversity is just a perception then we can see that our idea of disability is merely a point of view as well. The words we use, such as disabled and handicapped, demarcate the division between what we perceive now as normal and what is not. This idea of normal is a perception that changes between every culture, every generation, from city to city, and even group to group at a single high school – where the kids will separate themselves into cliques. Surely as adults we can rise above this high school mentality of putting people into groups; of mandating what is normal. (I always think of The Breakfast Club when I think of cliques – Although, I have to admit, Judd Nelson was pretty cool.)
Normal is a perception; and we all know how malleable our perceptions can be.
If disability and the way we react to it is merely a point of view then why, you may ask, as a society do we even bother to label people as disabled? The primary modern reason is to offer accommodations – that is to say to provide features designed solely, and for the express use of people with disabilities. Usual accommodations are things like elevators, doors that are easy to open, bigger bathroom stalls, and curb cuts (this is the part of a curb that dips down to the street so that you do not have to step up). When you list the accommodations this way it all seems a little silly really – I mean these are all things that everyone appreciates. I have never been in a public bathroom and heard someone exclaim, “this stall is just too big! If only it were a little smaller!”
How many people use these accommodations? Lets be nerdy and do the math.
First, 1 in 5 are disabled so that’s 20% right off the start. Then we can add in the elderly (the largest growing demographic by the way, and if you are fortunate to live long enough eventually some part of your body will wear out), pregnant mothers, young families (ever try to get a stroller up the stairs or over a curb over and over? Not fun… not fun), people with bad backs, sports injuries (sprains, breaks, and tears are common for many activities, and this from a segment of society that we consider the healthiest), illness (even something as simple as a cold can make a flight of stairs seem like Everest – let alone if you have something more serious). The truth is that unless you never grow old, never become sick or injured, never have children, or don’t ever have anyone that you care about that does – then you will probably never need an accommodation. Even Superman himself doesn’t fit this bill. Who are these accommodations really for then? Obviously they are for everyone. To separate just people with permanent disabilities is a little short sighted, and really not all that useful. Perhaps instead of a person in a wheelchair as the symbol for accommodation we should just simply have the symbol of a person – just that; nothing more is needed, and when you see that symbol you know that something has been done to make life easier for anyone that needs it for whatever the reason.
Is all of this even important you may ask; well, consider this – basic civil rights weren’t even granted to people with disabilities until 1990 with the ADA act which amended the 1964 civil rights law. Which means that before 1990 it may not have been ‘right’ to discriminate a person because of disability – to not hire you for a job or allow you entrance into a establishment, but it was legal. The truth is that it still happens – a lot. My family (mother, dad, wife and 3 year old son), and I were asked to leave a restaurant a just couple of weeks ago because of Echo my seeing eye dog. Did we go? No, and eventually we were sat in the very back in a separate dining room after I told the manager, very calmly, to get the owner of the restaurant on the phone, and that I would call the police and have them explain the law to him. The owner told him to sit us, but with conditions – all of which we ignored because they were illegal. The truth is too that I didn’t push it further because most police do not know civil rights law that well, and many do not know that people with disabilities are protected under it. A guide dog, for the purposes of the law, is considered the same as a wheelchair or any other medical equipment and cannot be denied access to a public establishment. You cannot say that a person may enter your bookstore, but their wheelchair must stay outside; before 1990 perhaps you could, but certainly not now.
I mention this one incident among many because the current perception on disability has very real ramifications. The perception that disability denotes weakness, only affects a marginal part of society, and is something that can be ignored is wrong. I look very forward to the day when no more mothers are coming up to me crying over their children because of this flawed perception. It is true that disability by its very nature is a challenge, but that is all it is – an event that requires a special effort for adaptation. It is not defeat, it is not failure, and it most certainly is not weakness.