Categories
Disability

NEW IDEAS ARE DIFFICULT

The following article was submitted for publication to the Baltimore Sun on December 29th, 2015.  It’s difficult to say, in under 750 words, anything that has nuance or depth, but, I did feel as though we should try to alert our Baltimore Community that this very unique project is seeking funding and the challenges we face.:

“I am from the minority called disability. It’s a complex group, some disabled from birth and most as adults, and if your disabilities are mental, nobody knows you have it just by looking. Unlike being a racial minority, everyone wishes the best for us. Our road to hell is paved by the good intentions of the nondisabled. You care. You pat us on the head and tell us to be strong, how brave we are, how amazing we are, and how impressed you are when we smile. Unfortunately, all this misplaced compassion, however kindly meant, really doesn’t empower us to live our lives or raise our families.

The IMAGE Center of Maryland, based in Towson, is working on a project that will literally change the lives of over 600 million people with disabilities throughout the world at a cost of under five million dollars, but, ideas that don’t fit neatly into our preconceptions, also don’t fit into existing funding mechanisms.   The IMAGE Center doesn’t see disability the way you probably do. We see much of disability as a tools and techniques problem rather than a limitation you must learn to accept. What the woman paralyzed wants to know is, “How do I get my life back?” How do I raise my kids, drive the car and get back to work?” And unfortunately, there isn’t any place on the web for her to see people just like her do these simple things. She can go on the web and search for “wheel chair cooking” but think about it for a moment. Being in a wheelchair doesn’t really tell you much about her. How much leg movement does she still have? Can she stand some? Can she move one leg but not the other? And, how much arm or hand use does she have? Some fingers on one hand but not the other? Left arm but not right? Each of these is important if she’s really going to see people who are solving the problem she needs to solve.

Recognizing this, the IMAGE Center is developing an online web sharing and search tool so she can see people, dozens or hundreds of them just like her, successfully living their lives and how they do it.   Think about everything you know how to do. You learned it by observing and imitating. That’s the way humans learn. Unfortunately, most people with disabilities, whether temporary or permanent, have never seen anyone like them and how they solve daily life problems. So, hundreds of millions of people throughout the world struggle to make a life without the essential of imitation.   With the modern web it is possible to create a video sharing site where people can specify their exact set of limitations and see dozens or hundreds of people just like them and how they create solutions for everything. We call it the Aging & Disability Skills Gateway. Check it out at: www.disabilityskills.org   For most of us, disability means care. Disability means less of a life except for those few who succeed that we regard as heroes and amazing, not realizing that these are just the creative few who can make up a life without that all essential roadmap of people to imitate.

Medical professionals want to cure us. Disability professionals want to care for us. The press wants feel good stories about the disabled hero overcoming all odds, or pictures of the ice bucket challenge, while ignoring the actual challenges of the disability itself.   Slowly we are making progress. A recent TED talk profiled our project as one of the three primary challenges of disability in the 21st century.   We here at the IMAGE Center leave 2015 frustrated. We know that out there somewhere are people who see disability as a problem to be solved. We know there are those of you out there who will join us as we create this new vision of disability. But for the moment, like other minorities, we still feel like the power structure and those who work in it are well intentioned yet misguided.”

Categories
Disability

Some Days It Just Hurts

Frustrated guy with hand over faceThere’s no denying that some days it just hurts. No matter how I act, no matter what I do, the world simply won’t budge.

I’m walking to the bus stop this morning and arrive just as the bus pulls up. I walk up and say to this guy who is in line, “Hey, can you tell me what number bus this is?” He turns around, does a double take, puts his hand on my shoulder in the kindest most disgustingly patronizing way says, “It’s an 8. Is that your bus? Do you need help?” All of this in a tone that places me somewhere below the functional level of a 2 year old.

I say, “No, that’s not my bus,” and walk away, just wanting to get away from this walking attitude problem shaped like a human.

Oh, but it doesn’t end there. A minute later after all the people in line are on the bus this guy jumps off the bus and runs back to me to ask, …You guessed it!! “Son, did you want this bus?” When I responded that I didn’t he said, “Are you sure?” I was. “OK,” he says and I realize he’s the driver of the damn bus. He’s making this entire bus load of people wait while he finds out if the blind man really does, or does not, want to ride his bus.

So, what can I say. There will come a time when this sort of humiliation will not exist, but that time is not now. For now, we must learn to empathize, tolerate, avoid and educate. If pain teaches lessons we have buckets full of it. If bearing humiliation strengthens we’re really really strong.

If on the other hand, you slip occasionally and say, “Take your hands off me and stop treating me like a two year old.” There’s a place for that too. Its the only thing some people understand or, maybe they won’t understand. maybe you’ll just feel better. And, that’s good sometimes as well.

Categories
Impression Management

The Halo Effect

Impression management requires that people with disabilities learn to recognize and counteract the “halo effect.” In essence, the halo effect says that people with visible disabilities are angelic creatures who, as my grandmother use to say, “wouldn’t say dirt if they had a mouth full of it.”

In other words, we’re somehow above the worldly creatures of Earth. We don’t drink, smoke or swear. We would never steal, are always polite, and we’re cheerful. Indeed, one often hears people say, “But he’s so happy.” As though being happy is somehow, in and of itself, God’s make-up call for the disability in the first place.

The problem with this halo effect, or as I call it, “the innocence effect” is that it really limits your potential to meet people, make friends and get jobs. Imagine how you would feel if the person you were next to is somebody very close to Sainthood. Is this the kind of person you’d want to take out for pizza? Ok, Ok, so maybe you’d take St. Francis out to pick some flowers, but even then you’d keep expecting the birds to land on his shoulders. How disconcerting.

Saints just aren’t the folks that people say, “This person reminds me of myself. He’s comfortable to be around. Just the kind of person I want to work on the job with.” No, Saints just aren’t needed in the workplace.

What you’re striving for when you meet a potential employer is her going away from the meeting saying, “Now, that’s a person I feel comfortable around and can communicate easily with. Seems to me she has some real practical problem solving ability and can contribute positively to service growth.” If she feels like you’re a Saint it just won’t happen.

Let’s first give a few guidelines for how to recognize when somebody just might be treating you as though you’re a saint.

1. If the person speaks very softly, it’s a possibility. They are kind of acting as though they’re in a church.

2. If the waitress offers everyone at the table a choice of wines and offers you a list of soft drinks, you’re safe in assuming that your sainthood is close.

3. If a group of kids are yelling and laughing with one another until you get close, at which time they become very quiet, you just might want to consider that you’re being held pretty high on a pedestal.

So, here are a few techniques for counteracting the “halo effect.”

1. Decide whether the person you’re with is a “darn” or a “damn” person and use the least offensive word. That is, if you’re in a trucking office and the person is wearing a t-shirt you can safely use a sentence with damn in it. If on the other hand, you’re applying at the Catholic Charities office, you need to stick to “darn.” In either case, this establishes your lack of saintliness. Don’t try phooey, shucks, or gee-whiz. These will cement your sainthood.

2. If you’re at a reception in which alcohol is served, and your values allow for it, you might consider carrying around a drink that looks alcoholic, such as a bottle of beer. It’s a prop that sends that same “I’m not a saint” message. I’m not saying you should drink nor am I suggesting you should do this one if it’s against your values. What I am suggesting is that you must find a way to establish yourself as an ordinary person in the minds of those who think you are not of this Earth.

3. Sit in the back three rows of audiences when you can. This is where troublemakers and rebels sit so although it isn’t a strong message sender, (many people not of the troublemaking variety also sit there), it does add to your general image of human being.

4. You might consider such things as: multi-colored hair, nose rings, bellybutton rings, Etc. My only caveat with these devices is that although they do send messages of, “I’m not an angel,” they also offend some older people to the point that they may not see your other fine qualities. But, all of life is about mixing and matching our wardrobe for the right occasion. So, think about it and be your own judge. Some modern wardrobe accessories serve to send the message that you’re in touch with current fashions. Others say, “I’m a rebel.” Still others say, “I’m sexy.” All of this is important in its own way to help establish you as a person who is a part of modern society, not isolated from it.

5. Carry a copy of Rolling Stone around with you in case you need to pull it out and send a quick message of what, I’m not sure, but certainly not sainthood.

Please, add your methods of impression management for the halo effect in the comments section, so we can teach them to others. These elements of impression management are critical to your success in getting that job. When you go into that job interview there is little doubt of your underlying qualifications. In other words, you probably have the technical skills or you wouldn’t be there. Although there are other factors that play into an interview, the one that is essential is “chemistry.” Do you and the interviewer develop a chemistry of shared experience? If you do, the likelihood is that you’ve taken a big step toward the job. If not, you will seldom get the chance to show your skills.

So, send along your own techniques. Until then, I need to remove my nose ring, run this darn thing through the speller and send it off while the stylist finishes punking my hair.


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