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Tuesday, November 3, 2009

Hostile Social Environments

With election day almost here I have been thinking of hostile social environments. I know when I vote I will most likely have a negative social encounter with either a poll worker or fellow voter. It happens all the time. This made me think of the other places I try to avoid because I know I will have a bad experience. By bad I mean I will be treated with disrespect or encounter a needless architectural or attitudinal barrier. Major professional sporting events are often problematic. Architectural barriers in the form of grossly inadequate handicap seating areas are a major variable as are ignorant drunks that seem magnetically drawn to my wheelchair. Secondary schools in my area, particularly my son's public school, seem hostile to the presence of a parent with a disability. But these place pale in comparison to the following places:

1. All Catholic churches: I grew up Catholic and went to Catholic secondary school. I have the emotional scars that often come with such an upbringing. Yet in spite of it all I still consider myself to be Catholic and when troubled read the Bible. In short, I am a believer. But I cannot believe nor could I ever pray or worship at Church. My problem is that I expect to be treated like everyone else. This does not happen in the Catholic Churches I have visited. Many churches have architectural barriers that are easily overcome and I often notice Churches have ramps. What no Churches have is a welcoming social environment. Each every time I go to Church I have a bad experience. It is the norm for someone to come up to me and state "If you prayed harder you would walk again" or "If you accept Christ as your savior you will rise up and walk". Usually this comment is uttered by an elderly person. This sort of old fashioned ignorance is somewhat forgivable though certainly demeaning. But this is not the lone reason why I dislike going to Church. It is the truly strange reaction I get from religious zealots who seem to think one of two things: 1. I am the anti-Christ. 2. I was struck down by God to punish me for sins I committed in my lifetime. This sort of reaction I cannot live with. Frankly, part of me is worried about my personal safety when I encounter these people. The fact the Church and so called leaders such as priests and nuns are present when these comments are made and do nothing is unforgivable. Their silence in the face of such blasphemy is an afront to my humanity.

2. Health Food Stores: I never ever go into health food stores. Thanks to the internet, I have not been to a health food store in a long time. When shopping in such a place I encounter people who are intensely curious about my disability. They want to know why I use a wheelchair and how long I have used one. I do my best to avoid this line of questioning because I know what is coming next. Comments such as this are the norm: "If you took the following vitamin regime I am sure you could walk again" or "Have you ever tried the following non traditional medical routine". There is the unquestioned belief I have needlessly accepted my fate, paralysis, and that they have the knowledge to cure me. How does one respond to such an ill founded conclusion? If feeling nasty I have told those especially aggressive in their quest to cure me that all my medical problems started from an unusual vitamin regime. I do not recommend this course of action--when I have done this I have worried about getting punched in the nose.

3. Health Clubs/Athletic Gyms: Paralyzed or not, I have always disliked gyms. If I want to physically exert myself I go kayaking, hiking, or skiing. I do not enjoy lifting weights or working out on any machine. I find such activities inherently boring. But what bothers me about gyms is the stares. A gym is a place where one is very body aware, it is the nature of the beast. My body does not fit in. And when confronted with a body such as mine people stare-and they stare a lot. Mirrors abound and as do the stares. What these stares mean I am not so sure. Pity from some, curiosity, revulsion, supercripdom, whatever. It is not a positive experience. Ironically gyms from what I have observed often go out of their way to be physically accessible. I know one local gym that even offers a membership discount to people with a disability. But the barriers present are not architectural but social. Simply put, I do not like being stared at and hence avoid gyms.

4. Hospitals: I hate hospitals but when I walk into one I feel at home, as though an inner calm envelopes me. That antiseptic smell is comforting and akin I suppose to the smell of an apple pie baking in a kitchen. The problem is that people like me with a complex medical past draw the interest of curious doctors. Good doctors are always curious and they love to ask detailed questions about my medical history. The fact they miss is that my medical history and paralysis is more often than not irrelevant. This does not stop them from asking many questions which need not be asked. The real issue though is when I am in a hospital one and all think I am a patient. This leap in logic leads to many to make false assumptions and many hospital workers treat me as though I have no role in society. Thus in the past when I have brought my son to the emergency room staff members are stunned I am a father responsible for the care of my child. I know this because they ask "Are you the biological father?" or "Where is the child's guardian?" This of course ignores the obvious--like my son needs stitches and his finger is covered in a bloody bandage. On the rare occasion I have been a patient, the fact my needs are different are always a problem. The overwhelming concern is will my care be more work for the staff. Once it is clear this is not an issue, the problem becomes hospitals are not prepared to deal with a paralyzed body. For example, upon admission one needs to be weighed. The scale to weigh someone in their wheelchair never ever works. Examination tables are never accessible nor are most procedure rooms. In short, architectural and attitudinal barriers abound leading me to conclude hospitals are dangerous places. You see I am not fully human in the eyes of many staff workers and fear, truly and sincerely fear, my life will somehow be snuffed out because someone decides I have suffered enough.

I am very curious if readers can add to this list. I have not mentioned airline terminals and the experience of getting on and off an airplane. The point here is that mass transportation as anyone that uses a wheelchair knows is often a problem. I am sure I have missed some places that generate negative experiences. So please comment. I want to know where else I should avoid!


Matthew Smith said...

Unfortunately, a lot of the business health food shops do is in quackery - so-called superfoods and fad diets, books and other merchandise from discredited "nutritionists" like Patrick Holford, so it's not surprising that they should be popular with, or even staffed with, people sold on one sort of quackery or another. The big health food/organic shops like Whole Foods and (here in the UK) Planet Organic tend to be staffed with students who are less likely to preach this kind of nonsense.

I used to believe in complementary and alternative medicine and my family have been visiting chiropractors since the early 1990s. I've also had people trying to sell NAET to me, which sounds totally unscientific. I had various niggling problems throughout childhood which sometimes made life difficult, among them short ham-strings and (allegedly) fusion in my lower spine (which is why I can't sit comfortably on the floor). The first time I went to a chiropractor, the quack took an X-ray (standard practice) and told me there was no fusion. I believed him at the time and let him do the business. Now, I wonder if he was talking out of his hat.

This article is by a woman who has retinitis pigmentosa and is going blind, and some woman tried to sell her the Gerson treatment, some sort of radical juice-only detox diet. It may have produced a slight improvement in her vision, but the regime took up pretty much all of her time leaving her none for a social life and in the end she said it was worse than going blind.

william Peace said...

Matt, Here in the USA health food stores and organic food shops are often separate entities. In my area most health shops are staffed by zealots. I suspect there is some regional and national diversity.
I am not at all opposed to alternative medicine provided it has a grounding in science. Quackery as you point out is all too common. I consider this unethical preying on those that lack an adequate education or desperately and chronically ill people.

erika said...

How tragic that a great deal of struggles and difficulties a disabled person encounters stems from social attitude and its consequences, rather than the disability itself. Maybe if society was more accepting and accommodating and adapting more to the needs of the disabled, than becoming disabled or having a disabled child wouldn't be regarded as "life-shattering". And then maybe people would be less open to ideas as infanticide or the Ashley treatment.

Reading about your experience with churches just simply infuriated me. I would want to tell you to look for a different church, even though the sad reality is that human ignorance and stupidity is omnipresent. Even in the best churches I could probably find someone who thinks that I just don't have enough faith in my daughter's "healing" or better yet, I must have done something extraordinarily sinful for which God is punishing my daughter. (Although faith-healers usually don't grow back missing parts of chromosomes.) I want to believe that you could find a church where ignorance is not the norm and at least the priests and nuns act in a Christ-like manner.

Becs said...

My little Catholic church in Jersey has a ramp and parking. Most people in wheelchairs sit close to the front or the very back. The priest doesn't bother the person - there's a little gestural dialogue that happens. You want to take Holy Communion? Yes? No? Okay.

What bothers me most about my church is that no one in a wheelchair could get into the chapel used for displaying the Eucharist. Spending an hour as a Eucharistic Guardian means a lot to me and I think others should have the same opportunity.

Oh - went to the old Yankee Stadium with a wheeler a couple of times and encountered no problems except parking.

william Peace said...

Erika, I am content avoiding the Church. I can commune with God anywhere I want. The Church is a large institution that is filled with good and bad people. Thus it is like any other large organization. And yes, the real problems people with a disability encounter are placed on top of a physical deficit by society.
Becs, I too have noted that while one can get in many Churches often the alter and chapel are not accessible. It makes me wonder if the Church has some sort of check list to meet the letter of the law but not the intent.
I hate the Yankees. I hate the old and new stadium. For decades the Yankees aggressively discriminated against people with a disability and lost a court case years ago. The judge threw the proverbial book at them. Apparently the Yankees have changed. Your comments and others indicate this. I just cannot forgive or forget what took place when I was younger. And more to the point I like the Mets. Tonight I am rooting for Philadelphia.

FridaWrites said...

I've thought about this today, and I am really having a hard time coming up with a place where people aren't hostile to those with disabilities--there's someone everywhere who is, though I try to seek out those who aren't (and hope they aren't thinking, oh no, not her again). I.e., while some restaurants can't handle disability, others do so well. But even when the staff in a store or restaurant is conistently good and helpful in appropriate ways, the customers might not be. One never knows what to expect--it's always an adventure, often daunting. I'd like to have a consistent approach, but people are so wildly creative with their prejudices or inappropriateness that I get flummoxed every time.

I do find many doctors' offices are hostile--that they don't understand or listen, even though people with multiple or lasting health issues or a disability know themselves pretty well and what's within the range of normal for them and what's really not. The ones who aren't this way (or remain this way) are a blessing.

Chiropractors are good for aches and pains and some kinds of issue, but once the health issue becomes very major, they often quack out and become judgmental.

I found the same with churches--even when they are more compassionate, members don't listen to what someone's stated limitations are.

Katja said...

I'm going to agree with you on most churches. Many churches seem deeply mired in some variation of the medical model of disability - the one where the disabled are the Other, to whom we get to minister to store up our rubies in heaven.

Gyms, airport terminals - maybe I'm thicker skinned, but I can't say I feel like I'm particularly conspicuous in those places. But I love lifting weights, so that's an ameliorating factor. I also subscribe to the theory that people are not nearly as interested in us as we think they are, but that may just be for my own peace of mind.

william Peace said...

Katja, You make a good point about the degree of others interest in people with a disability. It is hard to really know what is in the mind of others. This is especially true given the fact routine social interaction is often awkward between people with and those without a disability. Lots of people enjoy going to the gym--more power to you and others that lift weights. It is just not my thing.

emma said...

Hi, I came to your blog through Erika'. When I first read this I had been tempted to right Greece (whole country, no exception), but didn't. However, just to let you know, after an incident last night I have mentioned this post and my initial inclination at my blog.

william Peace said...

Emma, Welcome! I have read your blog. Greece has a very different cultural response to disability. I can appreciate your frustration. I spent much time in Europe and other countries and am amazed at how differently disability is perceived. Physical barriers are the norm in some countries with no effort being made to change. We may have laws in this country that require access but they are often ignored. This is as wrong as what you experience in Greece. Does any advocacy take place?

emma said...

There is advocacy, but it's quite limited, and for the most part there is no media, or societal interest (I think this is a problem everywhere too, disability advocacy comes last in the list of things to be talked about). There also laws which are being flouted all the time.

Even more frustratingly, because advocacy is in it's infancy so to speak, there seems to be a lot of confusion amongst different groups, what is disability? should it be called disability? Which can end up diffusing the strength of the "group".

I ask myself all the time, what is it that has made advocacy successful elsewhere? What is the difference between Greece and other countries?

william Peace said...

Emma, I cannot comment on the social situation of people with a disability in Greece. But I can state in terms of successful advocacy one needs to put a face on the problem. Successful social movements are well organized, practice civil disobedience and have a single person that represents the given cause. When you have these elements present real change can take place.