South Africa celebrates National Disability Rights Awareness Month between 3 November and 3 December each year. The last day of the month is then celebrated as both the International Day of Persons with Disabilities and as National Disability Rights Awareness Day.
There are many ways in which a person can be affected by a disability leaving them impaired physically, cognitively, mentally, emotionally, developmentally or a combination of these. A disability may present itself from birth or only develop at a later stage in a person’s lifetime.
Disability Awareness Month offers people the opportunity to broaden their understanding of various disabilities and the impact they have on lives, as well as to make efforts towards removing barriers in society that are exclusionary to improve the quality of life of people with disabilities through concrete action.
Today, an increasing number of people are making changes to their lifestyles, encouraging a shift towards a more health conscious, wellness-orientated culture. With this growing interest, it becomes more important for society to unpack their understanding of what living a healthy lifestyle means to those with long-term disabilities.
Health, wellness, and disability
New programs and models that cater specifically to persons with disabilities gives society a chance to encourage a more inclusive and participatory health and wellness culture. Although the programs and models that integrate health, wellness and disabilities may be new, the idea that people living with disabilities do not live healthy lifestyles should be quickly abandoned. Stereotypes that persons with disabilities are “unhealthy”, “sick”, or are “perpetual patients” suggests that they cannot be healthy or well in the wake of a more health-conscious movement and this is untrue.
For years, people with disabilities have found ways to adapt and integrate healthy behaviours and strategies into their lives to maintain their health and overall well-being. Many have supportive relationships with friends, families and social groups, and have found ways to access resources needed from various service systems. Making the effort to learn from such resourceful people will give society another perspective on the challenges related to health, wellness, and long-term disability and how best to address them.
To better understand what health promotion practices help or hinder people with disabilities, it becomes necessary to question how persons with disabilities define health and wellness and to determine from their perspective what barriers exist to being healthy and well.
The themes gathered from engaging persons with disabilities reveals a more complicated picture of health and wellness, which confirms the inter-connected nature of the relationship between a person, their community, and the health and social service systems.
Health promotion is defined as any combination of educational, organisational, economic, and environmental supports for behaviour conducive to health (Green and Johnson 1983). Any materials and programmes designed for educational purposes should always consider their target audience’s disabilities and needs – it is about becoming more mindful in all ways and every space.
To do this requires that programmes and materials are created to in such a way that they can be engaged by individuals with various learning challenges and impairments be they visual, physical, cognitive, and/or emotional.
When designing programmes for people with disabilities it is important to be sensitive to the environment where the activities will take place as well its potential effect on health behaviour.
People living with disabilities should live within environments that cater to their needs enabling them to fully participate in all aspects around them. Is the environment accessible? Is any reading or digital material created in a way that supports the visually and audibly impaired? Are the physical activities designed for various levels of strengths or with variations to movements for those who may be physically impaired to some degree?
Should these elements not be considered such cases maintain existing barriers to participation leaving people with disabilities challenged in trying to adopt meaningful changes to their health behaviours. The environment surrounding any individual must support behavioural change efforts and it is important for health practitioners to understand these challenges in order to remove known barriers. This, in turn, would improve the overall quality of life of people with disabilities which is inherently the goal of healthier lifestyles and well-being.
A measure of success for any health programme – along with improved health in behaviour, mortality, and rate of disease – would be an actual shift in societal structures, policies, and the level of control people would have over their lives (Minker, 1989).
In reality, such a change would have a positive impact on educational and organisational systems, mobility, accessibility, social and economic barriers, and communication challenges faced by people with disabilities.
When people with disabilities were asked what they described as health and wellness they responded saying that it is:
“Being able to function and having the chance to do what you want to do.”
“Being independent, having self-determination regarding choices, opportunities, activities.”
“Being able to get out and do stuff.”
For many people with disabilities, health and wellness ultimately is about having the capacity to perform both necessary and desired tasks daily without challenge. Accomplishing daily activities gives a sense of achievement and further boosts overall morale and well-being contributing to better states of mental and psychological health. It is necessary for persons with disabilities to feel a sense of self-determination and independence making it imperative for society and health programmes to facilitate an environment that promotes an inclusive experience for all individuals.
For the most part, health and wellness – although it has many dimensions – is initially and often primarily engaged with on a physical and emotional level, they are interconnected. When these two spheres of wellness are in balance then individuals share that they feel an improved sense of well-being. In addition, the rest of the dimensions of wellness that are equally important and in need of engagement are the community, family, friends (healthy relationships), and work.
Another defining aspect of the discussion of disability and ‘invisible’ illnesses is pain. When talking about pain it is the absence or level of pain that is experienced by a person with a disability that then contributes to their state of health. The more pain they are in, the more unwell they feel, the less pain the better they feel. However, in some cases, such as with individuals who have spinal cord injuries, a sensation of pain (the ability to feel it physically), meant that they were in a better state of health as an inability to feel a sensation physically would indicate the progression of nerve damage.
Therefore, for a broader and more inclusive definition of health promotion and what it entails, society should be educated to understand that health is “not merely a passive state of freedom from disease but as an active condition of being, in growth, development, and evolution” (Salk 1978). Another definition adds that “Health is what makes it possible for a person to be what he wants to be and to do what he wants to do” (Hochbaum 1978).
Thus, those creating, designing and implementing and health promotion activities for people with disabilities should understand that whatever they wish to share should enable all persons to engage in such a way that the person can do and be whoever they want to be in that environment. It also means that healthcare practitioners should ask if the proposed programme will enable the person with a disability to “grow, develop, and attain an optimal level of physical and mental well-being”.
Wellness is a multidimensional experience and to move towards it is an active process, one that incorporates the physical, emotional, social, occupational, spiritual, and intellectual. By making changes in the various dimensions, the environment of the individual can be shifted to facilitate a path to wellness. The multidimensional concepts of wellness should all be address by health professionals in their creation of health promotion activities, programmes, and interventions. People with disabilities should be included in such efforts not as an afterthought but in all ways so that these efforts begin to integrate disability awareness and inclusivity in society in a continuous and more permanent way. Health promotion activates should act as the initiator and protector of necessary changes to societal structures, raising awareness of disability rights, and autonomy to improve the everyday lives of people with disabilities.