To all those people who stare with questioning eyes

Dear you,

I guess I understand why you stare, why you see my body as breaking the rules of public bodyness or public body culture. In public the only best of the body should be shown. People want to see strong, durable, healthy, and able bodies. My body does not conform it rebels against these unspoken laws. My body is fighting a tiredness that you probably have never known, the kind of tiredness that feels like being wrestled down in the ground, like things in the centre of the earth are pulling me down towards them, my muscles just want to release and my body wants to collapse onto the floor. So if you see me on my knees it means I’m losing this battle or resting for a while. If you see me lying down I’m just in negotiation with my body I’m saying ‘body please don’t give up on me, take this moment of rest, and help me by reducing this tiredness and pain.’

I feel like there is this policing of my body in public spaces. I work in a very people orientated profession so I spend the majority of my time in these public spaces where I feel like my body breaks at least five rules of public body management. 

1. Rule one do not show physical or emotional pain.

2. Rule number two if you are visibly ill lock yourself and your illness away at home.

3. Rule number three stand on your own feet, do not sit on tables and walls and floors. Do not use wheelchairs or mobility aids, unless you are almost dying or have lost your legs.

4. Rule number four don’t show your lack of strength, eg. always open doors with ease

5. Rule number five do not lie down. Particularly do not lie down on floors, tables, corridors, toilets, stairwells, benches (unless you look homeless), walls, or spaces where people are passing through, or spaces where no body else is lying down.

Are your questioning eyes wondering why my body breaks these rules? are you worried that my disobeying body will some how threaten yours? are you trying to work out if I’m clinically insane, mad in a conscious way, or have something seriously wrong with me? Are you wondering why this young black woman would choose to use a cane or a wheelchair? Does it worry you that you too could need to use one one day? 

I just don’t know but I don’t have time to explain, I can not hand out this essay to all the people I pass by. My body is defiant, it pushes against these rules it challenges me to think about what the real worth of a body is, not just a vehicle we carry around to achieve our aims but a dynamic and changing entity that has its own demands that we are always negotiating. 

I’m so often apologising for my body and explaining for it but I sometimes I think why should I have to? My body has its own message to tell, I don’t know if it matters that people can’t hear it.

Maybe your body is neglected, maybe your body is overworked and run down maybe you hate the ways your body does not conform to these unspoken rules. Because no body could really pass most are too tall, to short, to fat, to dark, most experience pain and weakness and illness. Maybe my body reminds you of how you deny your body and of the energy you use keeping your body in line, keeping the questioning stares away from your own rule defying body. 

I do not need to understand why, I am not writing to you to stop you staring I’m not sure I have that power. I’m writing to you to free myself from your stares, I’m writing to you so that, I don’t have to constantly explain, I’m writing to free my body and to help me allow it to keep breaking the rules.

Love this article on wheelchair use

Wheelchair Use and Attitudes

By Sue Pearkes

Taken from the Journal of IiME Volume 2 Issue 2 - 2008

Sue Pearkes has had Myalgic Encephalomyelitis since January 2007 and has been using a wheelchair for about a year.

There is a message which needs to be publicised about wheelchairs, to the three groups of
people involved: the medical professions, the disabled community, and the able-bodied population at large.

Emotional Overtones

For some extraordinary reason (historical, perhaps?) there is an emotional subtext attached to wheelchairs. The able-bodied population tend to avoid or ignore them, possibly motivated by fear that they might “catch” disability; wheelchairs make the able-bodied uncomfortable, and they fear the possibility of ending up “in-a-wheelchair” (all one word).

The disabled community is also affected by this attitude—those who have been able-bodied will tend to have the same fears as able-bodied people, and those who have always been disabled will be influenced subconsciously by the existing negative attitudes of the able-bodied population. There is also the feeling that if one starts using a wheelchair, one has “given up”—one should fight to the utmost to keep out of the wheelchair, regardless of the pain, discomfort and curtailing of activities that one experiences as a result. (I consider “giving up” and “acceptance” to be two totally different concepts, incidentally.) I have a friend with cerebral palsy who, with advancing years, started to suffer badly with arthritis, and when he finally “gave in” and started using a wheelchair, found that it transformed his life, and he wished he had started using it years ago.

These attitudes are not helped by the medical professionals who, being human beings, will also often be influenced by these negative attitudes, having lived in the able-bodied community all their lives, before, during and after qualifying in their professions (I am including nurses, physiotherapists, occupational therapists etc. in “medical professions”). As professionals, they might be expected to help to improve the situation, but in actual fact they perpetuate and reinforce it. They may be conditioned to see  wheelchairs as a symbol of failure to achieve “healing” in their patients, and would therefore be very reluctant to promote something which they subconsciously believe shows them in a negative light. While they may need to warn people of the dangers of over-use of a wheelchair (muscle atrophy etc.), they should credit their patients with enough commonsense to use the wheelchair in a responsible way. They should ensure the right balance between general health and increased mobility; not indulging in a blanket rejection of wheelchairs, but considering the needs and circumstances of the individual patient, and in particular, listening to the patient’s views and desires. The patient, after all, is the one who best knows his or her body and circumstances, and is living with the disability on a daily basis. Diminishing someone’s ability to get around, or even to leave their house, or to condemn them to a daily grind of pain, by preventing them from using a wheelchair, can have an adverse effect on health; just being able to move around more easily, and to get out and about and socialise, surely has great health benefits.

A Mobility Aid

My attitude towards wheelchairs is that they are no different from glasses. You wear glasses to see better, and to improve your quality of life. You use a wheelchair to get around more easily, and to improve your quality of life.

The Wheelchair User

Most people (from all three groups, probably, but especially the able-bodied population) have no concept of the part-time wheelchair user. Most people think you are “in-a-wheelchair” (all one word) because you “can’t walk,” and if you can walk, you don’t need a wheelchair. I know I cause people a lot of confusion when I get out of my wheelchair and pull it up steps into shops etc. People often think that if you move your legs, or get out, then you are a fraud and don’t need the wheelchair. I have even been challenged by total strangers over this, as if it’s any of their business.

“In-a-wheelchair,” “wheelchair-bound,” “confined-to-a-wheelchair,” are all extremely emotive and negative phrases. Not thinking about this until I was disabled, I thought that the phrase “wheelchair user” was a bit of politically-correct-speak. Now, however, I always refer to myself as a “part-time wheelchair user” and realise how important it is to be accurate in this respect. People do not become super-glued to their wheelchairs, becoming a single, freakish entity in the process. This is reminiscent of when the Conquistadors first arrived in South America, and the resident population had never before seen a man on horseback. They assumed that the two together were one unit; some sort of bizarre new creature they had never seen before.

My own experience has been interesting. When I mentioned to my GP last year that I was intending to get a wheelchair (I got it privately so didn’t have to humiliate myself by asking for one from a profession that is so against recommending them!!) she gave the knee-jerk response, “Oh. We don’t like wheelchairs very much. People use them all the time and then their legs don’t work any more.” Professionals who say this should credit us with a little common sense. I took no notice of her, knowing full well that a wheelchair would help me, and this has proved to be the case. I got it in time for our holiday last year, and without it I could not have done any of the things the others did; as it was I participated fully, and even did some things the others did not! Since then, it has enabled me to get out and about and do things without causing me great physical discomfort and pain, or completely exhausting myself for the next few days.

The other professions involved in my care were much more positive. When the occupational therapist came to assess me at home, the first thing she saw when she came in was the wheelchair, and she said, “Oh good, you’ve got a wheelchair already.” From this I assumed that had I not got one, she would have recommended one for me. When I saw the physiotherapist at the hospital, she commended my healthy and balanced attitude not only towards my illness, but also towards the mobility equipment I have, saying, “You have got your stick, crutches, trolley and wheelchair, and you pick and choose what you want to use according to your need at any given moment.” Neither of these two professionals expressed any negative attitude towards the wheelchair, or towards me for using it.

When I saw my GP again recently, I expressed how much the wheelchair had improved my quality of life, and how the other professionals had approved it and encouraged me. I hope she was able to take this on board and realise that an out-of-hand rejection of wheelchairs is not useful or helpful, and that there is more to the picture than the danger of muscle atrophy.

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