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.
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.
My own approach to my wheelchair has, I hope, challenged the preconceived attitudes of those who know me, and those I meet when out and about. I have decided that if I am to use one, then I might as well make a statement with it, and have decorated it. I started at Christmas, with baubles, tinsel and lights, and got so much positive feedback that I was amazed and delighted. Total strangers would approach me, wreathed in smiles, and say how cool it was, and they would engage me in conversation, as a creative individual, and not as “someone-in-a-wheelchair” (all one word). When Christmas was over and I had to take the decorations off, suddenly I was invisible again. I couldn’t believe the difference. I decided to do something about it and put on flowers and lights, and immediately I got the positive reactions again. I also have decorated spoke-guards; these are available already decorated, or one can purchase plain ones and decorate them oneself, as I have done. They are a great way to express one’s personality and elevate the wheelchair from an anonymous, functional object to the status of fashion accessory.
Maybe one reason why many disabled people are reluctant to start using a wheelchair is that the wheelchairs themselves are so uninspiring. I am fortunate enough to be the owner of a modern, ultra-lightweight wheelchair with a low back, cambered wheels, optional push-handles and minimalist appearance. Recently, while it was away having some work done, I had to resort to a borrowed NHS-type wheelchair which convinced me even more about the need for decent wheelchairs to be made available to everyone.
The standard wheelchair, with its steel frame, is heavy, unwieldy, old-fashioned and ugly. The design has remained unchanged for decades. No wonder many people wouldn’t be seen dead using them, particularly young people, who tend to be style-conscious. They have fixed axles, a fixed back angle, an uncomfortable seat even with a good cushion, cumbersome armrests and enormous footrests which would put the average ice-breaker to shame. Using this type of wheelchair for a week (even part-time) made my back ache and my arms extremely tired, and I found it hard to maintain a good posture. The position of the wheels, centre of gravity etc., combined with the weight, made it impossible to do even the smallest wheelie, leaving me feeling as though I were glued to the floor. The turning circle was much too large and it lacked real manoeuvrability. The back was too high, and combined with the large armrests, this left me with a feeling of being trapped in a steel box, virtually unable to move.
Finally, the push-handles on this type of chair convey the negative message, “I am a helpless baby/cripple, push me!” Their very presence encourages well-meaning able-bodied people to push the user, whether they want it or not. Most disabled people prefer not to be pushed if possible, as they value their independence and autonomy as much as any able-bodied person, and have no desire to be moved around by anyone else, and at a speed not of their choice. Being pushed, especially by someone inexperienced, can be alarming, and make one feel vulnerable and out of control.
Modern ultra-lightweight wheelchairs are a totally different proposition. They were originally designed by disabled veterans returning from the Vietnam War, who were dissatisfied with the wheelchairs on offer, and re-engineered the wheelchair from the ground up. Their design features give rise to a radically different appearance. Having a rigid frame made of modern lightweight materials such as aluminium alloy or titanium, and doing away with the added bulk of a folding mechanism, large footplates, unnecessarily high back and handles, reduces the weight dramatically, which obviously benefits people with all kinds of disability, especially those with limited energy or muscle power. The low back, while giving excellent support to the lumbar region, allows for total freedom of movement for the upper body, and encourages good posture; I have often been asked whether I need more adequate support for my back, but I reply that on the contrary, the support is exactly where I need it.
Having the axles mounted further forward (the position is adjustable, as are many other features of these chairs) improves the efficiency of each push on the wheels as the user does not have to reach so far behind in order to obtain an adequate range of rotation. Self-propelling with a standard chair, the high back gets in the way, and one cannot get an adequate push. Of course, having the axles mounted further forward places the centre of gravity further back and compromises the stability somewhat, but this is balanced by increased energy efficiency and manoeuvrability and control of the chair.
Going up steep ramps certainly increases the risk of tipping over backwards, but I have learned by experience that this difficulty can be overcome by going up backwards. (By doing this, one is also using one’s biceps to pull oneself up, rather than the weaker triceps to push. This is reminiscent of reverse gear in the car being a very low gear and giving extra power.) Anti-tip tubes may help some users. If one does require pushing in a modern lightweight, optional push-handles are available, which can be temporarily inserted into brackets and removed again; alternatively some wheelchairs have discreet handles which fold down out of sight when not in use.
Having one’s centre of gravity virtually over the axles enables the user to do wheelies with ease; once trained in this technique, it is liberating. Even quite large obstacles, and uneven ground, and even gravel, can be negotiated by raising the front castors off the ground and moving on the two drive wheels only. When moving slowly on normal surfaces, one tends to use all four wheels, but at speed, or over uneven ground, the front castors need hardly touch the ground; this “cruise control” mode allows for less rolling resistance and greater efficiency on the part of the user, thus saving energy. Because of the design, and the lightness of the wheelchair, this does not require much upper body strength on the part of the user. All these features cause the wheelchair to become an extension of the user, and with practice and experience, movement can become easy and natural, and the environment can have a less disabling effect. The whole design, including the quick-release axles so that the wheels may be easily removed, makes it much easier for the disabled person to put the wheelchair in and out of the car, and to carry out other day to day activities independently.
Quite apart from all these design and engineering features which improve the use of the wheelchair, turning it into a hi-tech form of locomotion, the appearance in itself is of great benefit to the user. It is modern-looking, cool and sporty, and does not make the user look like an invalid. The absence of push-handles conveys the message that the user is independent and perfectly capable of managing without interference, which in itself improves one’s sense of autonomy.
The Importance of Choice
It is not only the practical and functional aspect that is relevant, but the style element is also very important. People are out and about using their wheelchairs, and the appearance can have a profound effect on one’s image; we express ourselves by our outward appearance and choice of clothes and hairstyle, and the appearance of one’s mobility aids is of equal importance. NHS grey, clunky, heavy and old fashioned equipment, whether it be a wheelchair, stick or crutches, do nothing for a person who is style-conscious. For most wheelchair users, it is not a matter of choice; they need a wheelchair in order to function. The able-bodied population (the “shoe-bound”) have a choice of design and style of the devices they use to interface with the ground, and would be justifiably outraged if some outside agency dictated from above what sort of shoes they should wear, regardless of their suitability or comfort. Why should wheelchairs, the devices many disabled people use to interface with the ground, be any different? Of course, the “does he take sugar” attitude prevails; the NHS remains largely paternalistic—“We know what is best for you”—because the poor little cripple cannot possibly think for himself, and if he expresses an opinion contrary to that of the professionals, he is deemed a “difficult patient.”
The argument the NHS gives against prescribing these wheelchairs is cost. However, I have come across people who, in the days when they used NHS chairs, had to own more than one because they were always breaking, and they needed one in reserve to use while the other was being repaired. When used by full-time users, wheelchairs take a lot of punishment, particularly if the user enjoys an active lifestyle. The modern lightweights, however, are immensely strong, and their users generally have no problems with maintenance once they progress beyond the NHS standard. The NHS contract with wheelchair manufacturers must be enormous; if they were to start prescribing modern lightweights, the cost would come down, which would benefit everybody. It does seem wrong that in a society where the welfare state is supposed to provide wheelchairs for those who need them, people have to pay for wheelchairs that actually work for them.
The fact that modern lightweight wheelchairs are much more adaptable and adjustable would also be a benefit; the “one-size-fits-all” NHS philosophy actually causes a lot of damage, discomfort and pain to users whose wheelchairs do not fit them. My week using the NHS Iron Maiden was enough to convince me of the truth of this. There is no way that I could maintain the lifestyle and independence I enjoy if my modern lightweight were to be exchanged for a standard NHS-issue chair.
The original modern lightweight wheelchairs were designed by wheelchair users. I consider this to be a crucial point. Able-bodied designers of wheelchairs do not have inside knowledge of what is needed in a wheelchair. If the NHS insists on using able-bodied designers and prescribers of wheelchairs, these people should at least be compelled to use them for a month or so, just to see what it is like, and experience for themselves what people really need and want.
The Need for Education
There seems to be a considerable need for education about wheelchairs and their use, amongst all three population groups. I do not know the best way to get this message across, but the purpose of this article is to reach as wide a forum as possible, where it can be read and acknowledged. In particular I should like it to be read by the professionals involved in the care and treatment of disabled people. It may make them stop and think about their attitude, at least—somehow we’ve got to get this message across. These professionals’ entrenched attitudes are doing us more harm than good, and causing no end of distress, when their role and function in life should be to help us. Pushing people to expend their precious reserves of energy, when they could be helped by the sensible use of such a marvellous device as a wheelchair, is totally wrong. We need encouragement, sensible advice and affirmation, not obstruction and condemnation.
Finally, sitting down as opposed to standing up is not necessarily a negative thing. At the recent Beijing Olympics, the Aussies accused the Brits of earning most of their medals sitting down!!!
The Use of Aids for People with ME – an Alternative View
Let us contrast the above article Wheelchair Use and Attitudes with the views expressed by NICE in their recent Guidelines for ME/CFS and the submissions from St Bartholomew's Hospital Chronic Fatigue Services to NICE in response to those same guidelines.
St Bartholomew's Hospital Chronic Fatigue Services is one of the CNCC clinics set up by the government for treating people with ME. As in the case of almost all of the CNCC clinics it offers a biopsychosocial view of ME and is headed by a psychiatrist.
These are the views submitted by St. Bartholomew's Hospital Chronic Fatigue Services for the NICE Draft Guidelines Development Group, in relation to such as wheel chairs for people with ME/CFS (source -
(i) On Disability aids and equipment:
The NICE Draft text stated -
18.104.22.168 For adults and children with moderate or severe symptoms, provision of equipment and adaptations (for example, a wheelchair, blue badge or stairlift) to allow individuals to improve their independence and quality of life should be considered, if appropriate and as part of an overall management plan. Comment from St Bartholomew's Hospital Chronic Fatigue Services:
“We disagree with this recommendation.
Why should someone who is only moderately disabled require any such equipment? Where is the warning about dependence being encouraged and expectation of recovery being damaged by the message that is given in this intervention?
We are in no doubt that it is a powerful message for a therapist of any sort to provide such aids.
Our view is that such aids should only be considered by a multi-disciplinary therapeutic team as a whole, and usually in the context of providing a temporary means for a patient to increase their activity levels.
An example would be providing a wheelchair for a bed-bound patient as part of their active rehabilitation programme. In our opinion, such aids should never be seen as a permanent solution to disability in this illness.” ------------------------------------------- Another part of the NICE Draft Guidelines:
22.214.171.124 For adults and children with moderate or severe symptoms, provision of equipment and adaptations (for example, a wheelchair, blue badge or stairlift) to allow individuals to improve their independence and quality of life should be considered, if appropriate and as part of an overall management plan.
In reply to this St Bartholomew's Hospital Chronic Fatigue Services wrote: “Equipment and aids may hinder recovery as much as help it, and their prescription needs to consider both outcomes. We believe disability aids can help a patient towards recovery if their use encourages a widening and increase in their own activities, on a temporary basis, as a means of supporting a rehabilitation programme. They should rarely if ever be used for patients with only moderate disabilities.” -------------------------------------------
From their web site -[http://www.bartsandthelondon.org.uk/formedia/press/release.asp?id=1216] St Bartholomew's Hospital Chronic Fatigue Services claim that theirs is a centre offering pioneering treatment for CFS/ME.
“The centre is a unique partnership between three separate Trusts which allows patients to experience an integrated “mind and body” approach involving physicians, psychiatrists, psychologists, physiotherapists and occupational therapists.”
The St Bartholomew's Hospital Chronic Fatigue service contains a recommended reading list on its web site which offers literature from well-known psychiatrists. The treatments offered at St Bartholomew's Hospital Chronic Fatigue Services are indicative of their approach to ME/CFS –
“The treatment options that are available at our service include Cognitive Behavioural Therapy (CBT) provided by Clinical Psychologists, Graded Exercise Therapy (GET) provided by Physiotherapists and a Return to Work Programme and activity management run by Occupational Therapy. “
“we are one of the study centres involved in the PACE trial. This large-scale trial is the first in the world to test and compare the effectiveness of four of the main treatments currently available for people suffering from CFS/ME. “ despite the PACE trials being condemned by ME patients for their use of the flawed Oxford diagnostic criteria [see http://www.investinme.org/Documents/Journals/Journal%20of%20IiME%20Vol%201%20Issue%202.pdf].
The Oxford (1991) criteria have been criticised for being too broad -- they specifically include those with psychiatric fatigue and they potentially capture people suffering from “fatigue” that occurs in 33 different disorders -- and for specifically excluding those with neurological disorders such as ME.