Here is an article by Carlo Bellieni, of the Pontifical Academy for Life and the European Society for Pediatric Research
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What is health? For most people, it is a state of “perfection”, thus excluding most of us; but health is a social right, therefore it should be a possibility for all. This makes us wonder what health really is, and in this aim centering our attention on people with disabilities as a paradigm is really useful. We will start from a well-known recent sport event.
The London 2012 Summer Paralympics (29 August – 9 September) was a major international multi-sport event for people with disabilities. These Paralympics were the second-largest multi-sport event ever held in the United Kingdom, after the 2012 Summer Olympics, and were the largest Paralympics ever: 4,294 athletes from 164 countries participated [1]. Paralympic games have had great media coverage and a huge presence of paying public in attendance [2]. People who watched the games for the first time – mostly by TV – have been captured, and athletes’ achievements conquered the audience: 2.7 million tickets were offered in total [1]. International Paralympic Committee president Philip Craven congratulated London for this achievement, crediting it to “the insatiable appetite the public has for top class elite sport” [2]; this was possible thanks to the great athletic efforts of the participants and trainers, and to their balanced and controlled interaction with technology, e.g. wheelchairs or prostheses [3-5]. Such a great manifestation and such a great public interest impose an important question: are Paralympics a show of rehabilitation achievements, or an actual expression of excellence in sport?
Swain and French [6] conceptualized an affirmative model of disability that has been forwarded as a non tragic view of disability and impairment, encompassing positive social identities for people with disabilities. Sport made by people with disabilities – and technical research in this field – has changed its aim: from recreation to actual competition. In a recent paper [7], Lucy Shuker, a British Paralympic wheelchair tennis player who is currently the highest-ranking woman in the sport in Britain, reflected upon her experience. For people with disabilities – she said – gaining access to sporting activities can be a challenge and there is not always opportunity available; and she adds: “I would love to have sensation, I would love to have the feeling in my body back, the control.” But at what cost? –she continues – “My life at the moment is so full; I played at Wimbledon on court 5. To look up and you are on centre court and it’s packed, on the Sunday on the final. To go to the Olympics in a stadium full of people, it’s just immense. What would I be doing if I didn’t have my accident?”. This is the feeling of many parathletes [8,9]: people with disabilities aim to excellence as everyone does, and often rate their quality of life similar to that of the rest of the population. This is the so-called “disability paradox” [10]: it depends on the different way people with disabilities cope with the limits of their condition [11,12]. This also means that they perceive themselves healthy: they do not ignore their disability but they are not overwhelmed by it; their disability does not represent an absolute obstacle to public admiration, to excellence and therefore to satisfaction. It is not an obstacle to passion, constancy and physical improvement. They are aware of their limitations, but their satisfaction encompasses the limitations: a typical trait of healthy people. And this subjective feeling is confirmed by their supporters and most of the audience of their achievements who perceive them as healthy athletes.
Thus, from 1988 onwards, Paralympics have been brought into the central arena of the Olympics, both literally and figuratively. They have embraced new sports, have encompassed a wider range of disabilities, and helped give credence to the belief that access to sport is available to all [13]. The president of the British Olympic Committee wrote: “We want to change public attitudes towards disability, celebrate the excellence of Paralympic sport” [14]. The classical ideal of sport was summarized in the motto “mens sana in corpore sano” (undamaged mind in an undamaged body – Juvenalis’ Satirae, X, 356), but nowadays even this is to be considered obsolete: Paralympic athletes have not an undamaged body, but nonetheless they are complete athletes; they are impaired, but their activity is not a surrogate of sport. When we see their achievements, we describe them as “healthy” despite their impairment. But if health is a “complete physical and mental wellbeing” as the WHO health definition says [15], disabled athletes cannot be considered healthy and all they can do is rehabilitation: if sport is an issue for perfect bodies, they cannot make sport. But it is so evident that these athletes make high-level performances that encompass the mere rehabilitation, through severe and skilled physical training and sometimes with achievements that provoke envy and admiration in the audience: this urges us to re-define what we mean by “health”, because the boundaries of the official WHO health definition [15] are too tight and its limits evident.
Health is currently interpreted either as the absence of illness, or as a state of complete wellbeing [15]. The former definition is an old concept, and does not consider that many disabled artists and scientists inspire the public opinion, despite their illness. The latter definition is utopian, but it is what the World Health Organization means with health, though nobody can conscientiously affirm to have “a complete state of physical, psychological and economic wellbeing” [15]. Various attempts have been made to improve this definition of health [16]. The best known is the Ottawa Charter [17], which emphasizes social and personal resources, as well as physical capacity in its health definition. A more recent attempt has proposed health as the “capacity of adapting and self manage” [18]; nevertheless, these definitions highlight the concepts of self-management and physical integrity, excluding most disabled people, though some have a perceived quality of life similar to others [19-21]. If we endorse the equation between disability and lack of health, we culturally preclude one of the basic rights to a group of people – implicitly assessing that they are morally different from the others. Nevertheless, health is not incompatible with disability [22] and people with disability have a particular approach and feeling of their health [23]. We recently [24] provided a further definition and we argued that, to be inclusive and complete, health can be defined as a “socially supported state of personal satisfaction”. Linking health to satisfaction, an athlete confined to a wheel chair who feels that he is healthy is considered to be absolutely right in his sensation. Health is not directly correlated with the integrity of the body, but with the satisfaction a person gets from his/her body or in some cases despite it. This definition includes the expression “socially supported” (i.e. “under the condition of being socially supported”) because “satisfaction” can be influenced or even imposed, or can be an illusion: therefore it should be socially supported, i.e. informed and assisted. Informed, because health risks can be subtle, hidden and hardly recognizable and can induce people to a belief of feeling satisfied, while the possibility of a better life have not yet been disclosed to them. And it should be assisted, because people can be too weak to claim their rights, and they can convince themselves to be satisfied with a sense of discomfort and resignation. If satisfaction is socially supported, it is not precluded to anyone and is therefore universal and people with disabilities are not excluded.
Nevertheless, Paralympic athletes find difficulties due to the difficulties to find high-level sponsors. [25] This is a problem common to “minor” spo
rts and female competitions, still marginated from the media. We look forward to seeing a full access to media granted to both “minor” sports, female competitions and Paralympic games. Nevertheless, “minor” sports and female competitions have at last achieved visibility during the Olympic games, while the sport made by people with disabilities stands a step behind and is waiting for a real emancipation. We therefore endorse the ideal continuity of Olympic and Paralympic games, to affirm the same dignity of sport made by people with and without disabilities.
In the light of the World Health Organization recommendations, stated in the World Report on Disability [26], paralympics underline the change of sport from therapeutic competition to an elite event that carries intrinsic prestige, with growing rivalry over medal tables. This is pedagogically and socially important not only in the interest of people with disabilities: the lack of self-esteem, so common in western society can only be antagonized by positive examples of integration and passion [27]. Therefore, giving new visibility to the Paralympic games is not only in the interest of people with disabilities, but in the general interest, as it implies a change in our concept of health, still linked to an utopian perfectionism. Media have a huge responsibility in this, showing that disabled sport is not a “curiosity” [28]: they should disclose the ideal continuity or even the identity between Olympic and Paralympic games: Paralympic athletes’ training and successes [29, 30] are paradigmatic for the whole sport movement.
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Notes
1. George J: It is a shame paralympic opening ceremony wasn’t seen by all. New York Times Aug 31st , 2012
2. William H: 2.1m Paralympic tickets snapped up. The Independent. 11 August 2012
3. Fliess-Douer O, Vanlandewijck YC, van der Woude LH. Reliability and validity of perceived self-efficacy in wheeled mobility scale among elite wheelchair-dependent athletes with a spinal cord injury. Disabil Rehabil. 2012Aug 29. [Epub ahead of print]
4. Curran SA, Frossard L. Biomechanical analyses of the performance of Paralympians: from foundation to elite level. Prosthet Orthot Int. 2012;36(3):380-95.
5. Webborn N, Van de Vliet P: Paralympic medicine. Lancet. 2012;380(9836):65-71.
6. Swayn J, French S: Toward an affirmation model of disability. Disability and Society 2000;15:569-82
7. Kavanagh E. Affirmation through disability: one athlete’s personal journey to the London Paralympic Games. Perspect Public Health. 2012;132(2):68-74.
8. Bull A: Oscar Pistorius angry at shock Paralympics 200m loss. The Guardian, 2012September 3.
9. Van Hilvoorde I &, Landeweerd L. Enhancing disabilities: transhumanism under the veil of inclusion? Disabil Rehabil. 2010;32(26):2222-7
10. Levine S, Feldman JJ, Elinson J: Does medical care make any good? In: Mechanic D (Ed.): Handbook of health, health care and the health professions. The Free Press, ,New York 1983; 394-404
11. Martin JJ, Whalen L. Self-concept and physical activity in athletes with physical disabilities. Disabil Health J. 2012;5(3):197-200
12. Drum CE, Horner-Johnson W, Krahn GL. Self-rated health and healthy days: examining the “disability paradox”. Disabil Health J. 2008 Apr;1(2):71-8
13. Gold JR & Gold MM. Access for all: the rise of the Paralympic Games. J R Soc Promot Health. 2007;127(3):133-41
14. Gibson, Owen O. Sainsbury’s announces sponsorship of 2012. Paralympics. The Guardian (London) 2010, May 4th
15. World Health Organisation. Basic documents. 39th ed. Geneva: WHO, 1992
16. Saracci R. The World Health Organisation needs to reconsider its definition of health. BMJ. 1997;314(7091):1409-10.
17. Ottawa Charter for Health Promotion Available at the following URL: www.who.int/hpr/NPH/docs/ottawa_charter_hp.pdf
18. Huber M, Knottnerus JA, Green L, van der Horst H, Jadad AR, Kromhout D, Leonard B, Lorig K, Loureiro MI, van der Meer JW, Schnabel P, Smith R, van Weel C & Smid H. How should we define health? BMJ. 2011 Jul 26;343:d4163.
19. Hess I. Students with visual impairments in Israel: quality of life as a subjective experience. Int J Adolesc Med Health 2011;23(3):257-62
20. King J, Yourman L, Ahalt C, Eng C, Knight SJ, Pérez-Stable EJ & Smith AK Quality of life in late-life disability: “I don’t feel bitter because I am in a wheelchair”. J Am Geriatr Soc. 2012;60(3):569-76
21. Latini G. The joy of having a child with Down syndrome. Acta Paediatr 2002;91(12):1291-3.
22. Nazli A. “I’m healthy”: construction of health in disability. Disabil Health J. 2012;5(4):233-40.
23. Shakespeare T. Still a health issue. Disabil Health J. 2012;5:128-130.
24. Bellieni CV, Buonocore G: Pleasing desires or pleasing wishes? A new approach to health definition. Ethics Med 2009;25(1):7-12.
25. Arthur D (2012): Brand power: why sponsoring Paralympians allows everyone to strike gold. The Conversation Aug 29 available at the following URL: http://theconversation.edu.au/brand-power-why-sponsoring-paralympians-allows-everyone-to-strike-gold-7549
26. Turk MA. World Report on Disability: what are the implications for the U.S.? Disabil Health J. 2012 Jul;5(3):127-8.
