Friday 11 September 2015

Access All Areas: Stairs or Stares?

I am trying to decide which is the greater barrier to disability access–stairs or stares?

Perhaps you or somebody else can be the judge.


The reason I ask is that whenever I (or other wheelchair-using friends) go out in public, we seem to attract attention and public scrutiny along with it.  Other people judge us according to their own pre-conceived ideas.

This is the second attempt at composing this blog entry.  The first time turned into a rant because I felt so angry and exasperated. With typing fingers flying non-stop, I soon found myself with a 1000 words on the page without even realising!  So … deep breath … calm … let's try again …

This all started when I "went out for a crochet night in" with Adrienne and Michelle.  Later in the week during casual conversation, Adrienne remarked that she could feel people staring at her as we walked from the car park to Michelle's hotel.  She wasn't sure why, but it made her feel uncomfortable.

I figured that people were probably curiously staring at the wheelchair or "person in a wheelchair" as we walked along.  A lot of the time, people are just glancing to recognise, "Wheelchair coming, where is it going? What do I do? Will my toes get run over? Where will I go to get out of the way? How should I respond?"  These are all valid responses to being confronted with something unfamiliar, especially on a crowded footpath.  Those quick glances don't bother me–it is just people being practical.

What does bother me is when people stare at length (rude!) and I am especially bothered when it affects the people with me.  It makes me angry. How dare anybody make my friends feel uncomfortable about being out in public with me!

I hate to say it, but this staring that Adrienne experienced is exactly what I and my other "wheelie" friends get every time we go anywhere in public.  Before we even venture out the door, we need to steel ourselves emotionally for the rude and judgmental people that present themselves as we are just trying to go about our everyday business like shopping, paying bills, having a coffee etc.  

It seems everybody has an opinion about people with disabilities, disability in general or the use of a wheelchair and for some reason, people feel compelled to come up to us and tell us!  Fortunately Adrienne and I were not accosted that evening but Adrienne still felt that people were not just looking at me but also judging her.  That would hardly encourage her to accompany me anywhere next time.

At this point, I think I will just unleash my original ramblings. They are an empassioned outpouring of frustration, illustrated with real examples of strangers' responses and reasons for 'stares' being greater barriers than 'stairs'. Perhaps you have some insights of your own that you can share.

I apologise for the length of my essay.
I do not apologise for the messages within. 
If you choose to read and consider, I thank you!



Attitudes create just as many barriers as physical obstacles in the environment.

While Stella Young illustrates the point that "no amount of positive thinking is going to turn a flight of stairs into a ramp", these physical issues are what they are: black and white. One can either get over them or not. The fix is often straightforward; e.g. add a ramp or lift, redesign and rebuild the physical environment or go somewhere else that wants my business and my money. Many physical barriers are reflections of prevailing attitudes.

Those intangible barriers, the attitudes of others and the behaviours that emanate from those attitudes are harder to handle - things like shop assistants who address my companion and talk about me in the third person when am right there and happen to be the one asking the question in the first place! It's complete strangers, dragging their own assumptions, value judgments and personal agendas along with them, who approach me to make some comment about my wheelchair or to ask some personal question for the satisfaction of their own curiosity; not because they know me or have concern for my welfare or even to recognise that, "hey, that's a real person with real feelings sitting in that wheelchair".

At least the vocal ones are upfront about their prejudices but the silent ones are just as hurtful. How can that be? Silence is golden, isn't it?  Didn't Mother (and her mother before her) advise, "If you can't say anything nice to a person, say nothing at all"?  Well, that's true. To a point.  Is it no coincidence that the notion of 'silence' joins with 'death' in the common turn of phrase 'deathly silent'?

Silence can be just as hurtful as a personal physical assault; like the bystanders to bullying who say or do nothing to stop it. There's the silence of being ignored and excluded; the silence of no apologies for rude behaviour; the person who can see a problem and has the privilege of being able to speak up and influence change and then chooses to remain silent.

One of the worst silent behaviours is the silent stare.  It is impossible to go out in public using my wheelchair or walker without having people stare.  For goodness sake, I am not the only person to use a wheelchair in the world.  Yes, that's a walker and there's no rule that states one needs to have grey hair to use one.

I get so sick of the rudeness.  Sure, if someone looks unusual, it is perfectly normal to perhaps take a second glance quickly - we all do that to others that might stand out in a crowd.  I do it myself. "Ooh! That woman's wearing a beautiful poncho", "That dip-dyed effect on her hair is interesting, can I get a second look because I think I like it?"  "Is that a crocheted shawl or a knitted one?"  Often we are moving in opposite directions or heading off quickly and so it is only ever a quick glance and if we happen to make eye contact I might complement the wearer of the poncho or ask the girl with groovy hair where she got it done.

In the same way, I have no issues with people who see a wheelchair coming and take a second glance. After all, they had better make sure that I don't run over their toes by accident!  Being down low, I don't always make it into people's peripheral vision so often people look at me to work out where I plan to go so they can keep out of harm's way!

I get most annoyed with people whose curiosity overcomes their manners and they stare at me at length.  What on earth goes through their heads?  Are they trying to exorcise some demon from my being when they stare with such intensity?  Are they so mentally challenged that they cannot fathom what a wheelchair is? Sure, it might be interesting for someone who has never seen one before but if you are that curious, go home and ask Messrs Google who have ample photographs of mobility aids.

Curiosity, no matter how fierce, is no excuse for rudeness, and if you do not know me from a bar of soap, the answer to your question is "No, do not approach me and ask about it unless you want intense questioning from me about how your shoes work while I marvel at how you can actually manage with those laces!" 

I'm sorry about the sarcasm. I am not a sarcastic person by nature but how else can I demonstrate the 'able-bodied' equivalent if the tables were turned? 

It is very tiresome to have unwanted attention from total strangers on every outing and this is how attitudes can create barriers.  One often needs emotional fortitude to brave the shopping centre etc. to cope with the onslaught.  There are times when I will not leave the house because I am feeling emotionally or physically fragile and it is all too hard.  It is very easy to become a homebody and socially isolated.

The going out isn't necessarily hard, it is dealing with the reception from total strangers that is exhausting. In some cases, strangers are downright abusive, especially if I reject their overtures, no matter how politely. What part of "No, thank you." can they not understand?   When other wheelchair-using friends have described this situation to able-bodied friends, they are met with disbelief that people could possibly be so rude and nasty...until the friends come out with us.

The issue arose again a few weekends ago when I went out with my friend Adrienne on a Friday night in the city.  We were heading along a busy thoroughfare. I was wheeling and she was walking beside me. Just how I like it. (I hate it when people insist on walking behind me because I can never hear what they are saying to me and I cannot twist my body around to speak back to them.)

I didn't notice people staring at us. I was too busy focussing on Adrienne and our conversation or being distracted by the city sights and shop window displays–it had been ages since I had been into the city and rarely go at night so I was having fun.  I was too busy looking around and, not being at everyone else's eye level, did not notice the stares of others; but Adrienne did and that made me sad.

It wasn't spoken, (that silence again!) but she felt unease about it. She sensed disapproval that she did not appear to be assisting me as if there were an unspoken expectation that a wheelchair user should have someone helping them by pushing their wheelchair. Did I look like I needed help?  I was not struggling. On the contrary, I was revelling in the smoothness and evenness of the paving that made independent wheeling possible.  (I like to find out these things so if I ever need to go there on my own, I can have confidence that the environment is accessible and I can physically manage the challenge.)  Adrienne was helping me by being my friend alongside me, allowing me to be 'me' and accepting my need to feel independent.

It frustrates me that strangers are not only judging me but also the people who are with me! How dare they attack my companions in this way!  I fear that no one will want to accompany me anywhere because of it and I am sad that my friends and family are caused to feel uncomfortable and self-conscious.

My children have experienced this discomfort too. Most children go through stages where their parents embarrass them, but enduring stares from total strangers is a lot to ask of them.  When one of them came home from a school trip, I couldn't ignore the comment, "It was so nice to go places without having to load and unload equipment and not have people staring at me all the time." Teenagers are self-conscious enough as it is without having that extra pressure loaded on them. Little children do not need it either!

I asked my eldest whether they, like Adrienne, had sensed an expectation that they should be 'helping' me more when we were out and whether they felt pressure to push me and the answer was, "Yes".  I wonder why that is.  What does that say about society's attitudes towards disability?

The most upsetting part of it, is that people can choose to behave a certain way. They can choose to be polite or rude. Along with stares come unspoken judgments which are not helpful to anyone. By the way, do you know the long stare that ends with a sudden looking away when I catch it? That's rude too. Don't do it.

Next time you are out and about, choose to be polite.


Which is the bigger barrier:
stairs or stares

 

Links & References

 

Crochet Between Worlds (Michelle's blog): http://crochetbetweentwoworlds.blogspot.com.au/

Lupey Loops, blog entries

Student ~ Teacher ~ Mentor (Adrienne's blog): http://mrsski71.blogspot.com.au/2013/01/crochet-love.html

6 comments:

  1. Hi Jodie. I am really sorry to hear of all the tough times you have had out in your wheelchair. I can honestly say that I have never noticed anyone really staring at me (but then I am not the world's most observant!), sometimes I meet someones eye and they will smile in response to my smile, I have been really fortunate and always found people ready to help by opening doors etc and a couple of times when we have been at show arenas, several people deep, there has always been someone in the crowd who has asked people to make room for me to go forward to the front where I can see. Hopefully if the more that have problems when using a wheelchair speak out like you just have then gradually attitudes will change. Hugs x

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    1. It is such a welcome relief to read that you have had good experiences while out and about. I am glad that people smile when your eyes meet and without the dreaded 'stare-oops-look away'. I will always try to smile and be friendly when making eye contact too because I want people to feel friendly towards wheelchair users and see me first and not the equipment.

      I agonised about posting this topic because I am not a 'whinger' but was worried that this could come across like that. In the end, I decided that I obviously feel strongly about the subject and there is definitely some room to educate people about the effects of people's behaviours, whether conscious or unconscious.

      Depending on one's circumstances, living with a chronic illness or disability can be socially isolating in itself. Anyone who has experienced lengthy illness or any major life change will have at least one story of friends or associates who fall away.

      Opportunities to make new friends may be fewer due to limited physical or financial capacities directly related to the illness/disability. Assistance may be required to access transport, activities and venues and it can be hard to access adequate support services for social outings.

      If someone is fortunate to meet a potential new friend, it would be a shame to lose a friendship before it even got started because of social pressure from the rudeness of others. I write my post for those people who find it hard to find and make friends as much as to vent my own frustration!

      I am glad that you interpreted my rambling post as I had intended it to be. Thank you for your support Sharon. I hope that you continue to find support and kindness while out and about. Hugs xx

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  2. I hear your pain, and feel understanding to the judgement. I find similar issues with being fat. I was ridiculed at Noarlunga the other day and it completely crushed me. I felt like I was back to being bullied at school. A rude woman was walking behind me and Mum. I know I walk slow from my compromised lung capacity, but I revel in the fact that I am out and about! I suddenly heard 'Check out the size of that arse!' I blushed and felt very sad. Then the voice came again, louder, 'Move your fat arse, not everyone is slow and fat like you!' as she pushed past me. She then proceeded to mime an elephant right in front of me.

    I was mortified and I am ashamed to say, left without finishing my shopping. It was such a shocking, unprovoked attack. I don't know why the most unforgivable thing a person can be is fat, I like to think my insides are not too horrible, and hope my actions help lessen my unattractive outside.

    I hope your friends will continue to walk beside you, I always will. You are a special shining light in my life, and my sister of choice.

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    1. :-O I am totally stunned! What makes a person think it is okay to be so horrible and mean? One wouldn't believe that a so-called 'adult' would behave in such a manner! I just want to hug you until you feel better. I know for a fact that your 'insides are not too horrible', especially your kind and loving heart!

      It saddens me that you consider your outside 'unattractive'. What makes a person 'attractive' is their whole personality. Looks count for nothing if the person inside has a nasty temperament. On the other hand, when I get to know a person - the whole person for who they are - it is 'the whole package' that makes someone attractive. I see you (on the outside) and recognise who you are (on the inside): Cheryl, who is caring, funny, brave and a most loyal friend that we (my family) all love.

      Try to dismiss those ugly people. I know it is easier said than done. They obviously have no clue about the effects of their actions. Take comfort knowing that those who really know you appreciate and love you, all of you, for who you are regardless of what you look like on the outside.

      "Those that mind, don't matter. Those that matter, don't mind"

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  3. We get many a look at Little Buddy, most of the time people are smiling but there are those adults that won't let their children near him, sort of like what he has is catching. It is a bit pathetic.
    Hugs,
    Meredith

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    1. On of my friends that has a visible disability experienced that attitude too so yours is not an isolated case, I am afraid! It isn't fair! It is sad when parents' ignorance generates fear of difference in children. I am certain that most of the negative emotions that get expressed in the world (e.g., bullying, anger, racism and other forms of negative discrimination) are based on fear. Parents need to love and nurture their children without instilling fear, building their self-esteem and confidence to take risks in the world because that is how they learn and grow. A healthy self-esteem and confidence build resilience in life.

      How sad that a child or person might miss out on the perfect friend or a soul mate because of irrational fears from those 'pathetic' parents. I am glad the negative responses buddy encounters are outweighed by smiles. All children need to feel loved and that they are included - a smile is a wonderful way to show that. What the world really needs is an International Smile Day!

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