a person nervously looking at a handicap placard

Disability Versus Accessibility

The neat thing about being a part of a community is that members can react to one another’s ideas to expand or personalize on the truths that we share. For instance, Mary Beth Skylis recently wrote an article entitled, "I Don’t Identify as Disabled," where she found it difficult to accept her "label" as relegating her to "disabled." I immediately felt drawn to share my own ideas.

Looking at this as a former English teacher, we see the prefix "dis" means not or none. Frankly, they’re a lot of things that Parkinson’s Dan is still able to do. In fact, I bet I can kick most people’s butts at the New York Times Spelling Bee game. In fact, I’m probably better at it at 5 AM when I come back from going to the bathroom in the middle of the night than the average person is when they are wide awake.

Can I paint like Van Gogh, do home improvement like Bob Villa, or juggle bowling pins like a circus clown? Uh, no. Then again, can people who are "abled" do these things?

Caught up in perfection

The phrase "differently-abled" may sound politically correct, but there’s a lot to be said for it. If you’ve never watched the video "Animal School," this is a good introduction to accessibility and abilities.

For instance, if we judge my dog Sparky for his ability to fly, he comes up far short of an eagle’s ability to soar majestically. However, if we judge an eagle based on its ability to fixate intently on playing with squeaky toys, then Sparky gets to do the celebration dance.

People are so caught up doing everything perfectly that they lose sight of what they can do well. Maybe we can't still do everything with Parkinson's, but we can still do a lot well, too.

Leveling the playing field

At my college, we changed the name of "Disability Services" to "Accessibility Services." To a person who is functioning "normally" (whatever that means), this might sound PC, but to a person with dyslexia, ADHD, or deafness, it shows that we recognize these people can do the same things as others if we tweak the environment.

In life, we all have different learning styles. Be this listening, watching, or performing skills to "get" how to learn - we’re all unique in how we learn. In education, this is covered under Universal Design for Learning.

For instance, maybe you like reading a textbook to learn while I like watching YouTube videos before I try to build a website. If we can both do the task, what difference does it make how we got there? If we eliminate one option and only certain people have grasped the lesson when it is over, then we’ve created a false sense of "disability."

In leveling the playing field, a person with a wheelchair is able to travel a sidewalk since there is a ramp present. One small change negates the obstacle and provides the access. Maybe accepting our Parkinson's condition means taking the help to stay steady.

The connection to Parkinson's

Having Parkinson’s isn’t the same as struggling with polynomials in algebra. But, in the basic sense, both cases involve our brains trying to process a problem that is thrown at it.

For example, I may be trying to think of the word that conveys my response. If I can’t approximate this, I might get something close instead. For instance, "plant life" might come out "plantation." Sometimes, just like I saw in the case of an English Language Learner, there is a logical connection to try to express the idea, but the chosen words are not precise.

Understanding the nature of the error helps a teacher to redirect not having the ability yet to mastering the skill in the future. Thus, the more people know about our lives and Parkinson's, the better we all function together.

Re-teaching ourselves

With Parkinson’s, we may draw a blank or "freeze" up when our body is trying to get our brain to do something. Maybe this will come out like a hiccup or a pause. Maybe it will come out in silence that might unfortunately cause embarrassment. However, by being empathetic to people’s challenges, we can ease their concerns of how they will be perceived. Yes, sometimes we have to abandon the right to be a selfish jerk to respect other people’s circumstances.

In these cases, it might be like when Pennsylvania Senator John Fetterman provided a disclaimer for his post-stroke speaking ability. Addressing the elephant in the room, he told his audience that he may slur words, but that he was getting better. He and his doctors felt he was getting better, but that he was still recovering. Does this make him disabled? A majority of Pennsylvania voters don’t believe so.1

My physical abilities have changed

As for the physical abilities that Parkinson’s disease takes from us, we face the decision of how we will look at ourselves. I have a National Parks pass, which is issued to people with disabilities for free.

The first time I used it in 2018, I was given a disability placard for the car. When we used it, I didn’t feel comfortable with the psychological baggage that went with it. To this day, I have never requested another placard. Some days, when my knees and legs give me grief, I think about when I will need one. It’s a scary feeling.

For now, I think about the last mountain that I climbed. I think about the hiking gear I’ll never use again. I think about the hiking club meetings that I don’t go to because it sucks to know it’s not worth the risk to go out on rocky trails. Does that make me disabled? The hand-over-hand rock climbing I once did that most people won’t attempt is now gone; does this make me disabled?

Some people choose not to be emphathetic

I think about the jerkish comment someone left on a post where I expressed the difference between being labeled a "disabled person" versus a "person with a disability." The battle for understanding semantics is difficult. Frankly, for too many people, it’s easier to just simplify people with disabilities so that they shut up and go back into the closet with their awkward existences.

Here, I wonder what the word is for someone who consciously chooses to not be empathetic. Does this word have a "dis" prefix? Can we DIS the dissers?

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