My Week In A Wheelchair #2: “Can I Help?”

Disability thinking graphicChildren stare; parents turn them away.

Waitresses don’t know whether to ask or ignore the obvious; they aren’t prepared to put you somewhere out of the way, so you feel self-conscious planted out in the middle of a walkway.

I am finding this to be an interesting social experiment if nothing else.  It’s interesting the way people react when faced with someone with a disability. Different cultures handle it in different ways.

Here’s an interesting quote from an article the Chicago Tribune posted:

In the seven years since a motorcycle accident left him paralyzed from the neck down, Ben Trockman has stopped paying attention to stares from strangers, or at least he’s stopped being bothered by them.

Though he’s learned to use humor to handle all manner of awkward encounters, Trockman wishes people would put their nervous attention to better use. They could say hello. Or strike up a conversation about baseball. He welcomes questions about life in his power wheelchair, or how he ended up there.

“I would so much rather someone say, ‘What happened to you?’ than stare from a distance and then walk away,” Trockman said. “It makes me feel better, it makes them feel better and that person will learn a little that day.”

Even though I am hurt temporarily, I find, like Ben Trockman, that people mostly avoid eye contact, look away or move way out of the way.

Injuries are not contagious.

People just feel awkward about how to act so they pretend. They pretend they don’t see me; they look right past the chair. They ignore the old lady bent over her cane, or become impatient for the tiny old couple with the wife who is blind, to cross the street.

What I really would like is to be treated as I always have. (I’m sure they feel the same.)

Or perhaps to have someone say, “Can I Help?”

“At the heart of the problem is that “people don’t acknowledge the person first; they acknowledge the disability,” says Michael Carmody in the Tribune article.

I’ve read the stories of people who feel invisible when they get old, or ostracized as the lone divorced person in a sea of couples, or left uninvited because they are single and tend to make seating charts awkward. I never thought I would be in a “category” though.

I always thought I would move between groups easily. My friends are found in many faiths, ethnicities, backgrounds, expats/nopats/repats, young/old, student/mentor, in-person and online. I thought I would always be uncategorizable, or at least belong to so many groups that I could always add something to the mix as an interesting conversationalist.

But now I am learning what it feels like to be marginalized.

There are things I can’t do, so I get passed by. I’m not on the list now. I have to reach out to see what happened at yesterday’s ladies golf match, or dinner, or to find out how the party went. It’s up to me to stay engaged. It takes a lot of effort to remember who I have to call or email, as that information used to flow automatically when I would see my friends each week.

Hmmmm… Out of sight, out of mind. Indeed.

Last night we went to dinner with friends- I needed to get out and wanted to see familiar faces. We skipped the wine tasting because it was being held in a room upstairs… I couldn’t face that barrier.

So we decided to stay downstairs with our friends and have dinner. She said, “I heard about your accident from G. He thought you fell out here on the golf course, but I said no, you fell somewhere else. So I asked B about what happened. My goodness.”  Oddly though, at no point did the conversation include “…so I thought I would call and see how it happened and how you’re doing.”  Even close friends get busy or don’t always know how to respond.

(Ahem… I just stopped for a moment- had to take my own advice- I sent an email to a friend whose husband has been in the hospital, just letting her know I care. I need to follow up and do more than that soon.)

So this has been an interesting experience for me. I understand better how the elderly can be left out. I understand a little more now about how the infirm and disabled can so easily be overlooked.

Last week? I was struggling to keep my normal routine- trying to understand how the disability accommodations we have here in the United States actually work to make life more manageable for those with difficulties.

This week, instead of pressing this issue, I’m doing a lot more resting and reading. It’s not possible right now to just pop out to the shop when I need a prescription filled. So I wait for my husband to come home to take care of it, in between making dinner and his other caretaker chores.

I can understand how easy it would be to slip away and just give up, if this is what I had to look forward to, as in forever.

Rather than become depressed, this made me curious. I wonder how other countries manage to remain connected to the old, infirm and disabled?

I found, in a report “conducted by the United Nations Population Fund and a group called HelpAge International that advocates for policies in support of the elderly” that Scandinavian countries were at the top. In fact, “Sweden ranks first, followed by Norway and Germany.”

Graphic display of Best and Worst Countries for care of the Elderly

“At the bottom of the list are Pakistan, Tanzania and Afghanistan. The United States, which typically ranked near the bottom of developed nations on these sorts of human welfare indices, performs unusually well here.” (The reports says we rank “above Iceland, Japan, Britain and much of Europe.” Who knew?)

The report goes on to describe something called an “enabling environment” in which the metric measures how friendly a society is to the elderly, such as physical safety, access to public transportation and the ease of maintaining social connections late in life, a key component of mental health and happiness.”

This last one is something I have noticed (missed) most acutely- “the ease of maintaining social connections late in life, a key component of mental health and happiness.”

Do you have this “enabling environment” where you are?

If we are measured as not doing so badly here in the United States, and yet I feel this isolated, what must it be like in other countries who are performing even worse than we are?

I was surprised a bit because the places on the bottom of the list are usually cultures where family is highly regarded. I would have thought it would have been different. Does any of this surprise you?

Scandinavia is no surprise for doing well, certainly. These Nordic countries always seem to have their act together on so many levels. Do you ever wonder why Scandinavians seem to have the high marks for transparency, happiness and now eldercare? And why others don’t? You think we’d learn something eventually.

On the other hand, “Russia scores extremely poorly on elderly welfare for its wealth levels. The country is plagued by age discrimination,” the report goes on.

This was evident in many places I traveled as well as in Azerbaijan to some degree.  Where the elderly had family, things were better, although with all the stairs, mobility is a real issue. Some widows or old age pensioners without children or spouses resorted to selling wares on the street during the transition after the collapse of the former Soviet Union, when pensions were not forthcoming. It was tough to see so many “Babushkas” on the street, without adequate coats, needing help. And yes, sometimes I too just looked away or passed by on my way to work. …I’m learning.

Logo for WHO/World Bank report on Disability 2011

The World Health Organization and World Bank commissioned a World Report on Disability in 2011. Here are a few excerpts on how people are perceived:

“I am a black woman with a disability. Some people make a bad face and don’t
include me. People don’t treat me well when they see my face but when I talk to them sometimes it is better. Before anyone makes a decision about someone with a disability  they should talk to them.
Haydeé

“Near the start of the bus route I climb on. I am one of the first passengers. People continue to embark on the bus. They look for a seat, gaze at my hearing aids, turn their glance quickly and continue walking by. Only when people with disabilities will really be part of the society; will be educated in every kindergarten and any school with personal assistance; live in the community and not in different institutions; work in all places and in any position with accessible means; and will have full accessibility to the public sphere, people may feel comfortable to sit next to us on the bus.”
Ahiya

“My life revolves around my two beautiful children. They see me as ‘Mummy’, not a person in a wheelchair and do not judge me or our life. This is now changing as my efforts to be part of their life is limited by the physical access of schools, parks and shops; the attitudes of other parents; and the reality of needing 8-hours support a day with my  personal care… 

I cannot get into the houses of my children’s friends and must wait outside for them to finish playing. I cannot get to all the classrooms at school so I have not met many other parents. I can’t get close to the playground in the middle of the park or help out at the sporting events my children want to be part of. Other parents see me as different, and I have had one parent not want my son to play with her son because I could not help with supervision in her inaccessible house.”
Samantha

Ouch! This makes me very conscious of how accessible I am to all kinds of people.

Where will this experience lead?

For me, it’s still too soon to say. Right now, though, I’m keeping my eyes open for more barriers that I personally need to overcome- not just the physical ones, but the caring ones.

My take away this week? “…acknowledge the person first.  This thought has to be high on my list. It’s a good Life Lesson that applies in every situation.

What about you? Have you learned or changed from being laid up? If you’ve had similar challenges, or have overcome your own obstacles, tell me about your experiences- I’d love to compare notes!

 

 

 

Sources:

PHOTO Credit: Opening image: Louis Lim, http://louislzm.wordpress.com/ pinned via http://inkyed.wordpress.com/2013/08/30/fridge-magnet-friday-12/

http://articles.chicagotribune.com/2013-06-12/health/sc-health-0612-dont-stare-20130612_1_disabilities-southern-indiana-cerebral-palsy

http://www.washingtonpost.com/blogs/worldviews/wp/2013/10/03/these-are-the-best-and-worst-countries-to-be-elderly/

http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf

#Longreads

 

7 thoughts on “My Week In A Wheelchair #2: “Can I Help?”

      • I’ve actually been thinking about how to talk about disability with my kids and this is very helpful in terms of clarifying my thinning and approach!

        Like

      • I’m so glad this has been helpful, Jennifer. You may also like the next upcoming post- I’m working right now on a piece about the reactions (both positive and critical) of the discussion (meaning my thoughts and how I presented what I was thinking).

        I’ve been surprised by the reactions, but am pleased that at least there is a good healthy discussion on the subject.
        Please continue to share your thoughts as your thinking and approach develop!

        Your kids are pretty lucky to have a parent willing to be so open and thoughtful!

        Like

    • Thanks, Margo! I agree- that tip seemed so obvious when I read it, and yet as I thought about it, I realized I don’t always do it! It’s become a good Life Lesson learned. So applicable in any situation!

      Like

  1. Pingback: When It Comes To Sympathy, Pity, Understanding- The Differences Are Subtle, But Important | Life Lessons

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