Mary Oschwald and Laurie Powers
Rehabilitation Research and Training Center Health and Wellness Consortium
Oregon Health and Science University

Introduction

New models of health and wellness specific to people with disabilities are broadening our understanding of what it means to live healthy and well and live with a long-term disability.  Though theoretical models of the intersection between health, wellness and disability may be new, living healthy and well is not something new for people with disabilities.  For years, people with disabilities have used strategies to maintain health and wellness, created supportive relationships, and accessed needed resources from various service systems.  It is from these resourceful people that we will continue learning about issues related to health, wellness and long-term disability.

Qualitative study

In order to understand health promotion practices and what helps or hinders people with disabilities in maintaining healthy lives, 19 focus groups were conducted with people with long-term disabilities.  Focus group questions centered on how participants defined health and wellness, and facilitators and barriers to being healthy and well.  Information from this study is rich and many themes emerged from participants’ shared experiences.  The themes paint a complex picture of health and wellness, suggesting the importance of the inter-connected relationship between the person, their community, and the health and social service systems. 

Definitions of Health and Wellness for Persons with Long-Term Disability

Focus group participants described health and wellness as:

• being able to function and having the chance to do what you want to do;

• being independent, having self-determination regarding choices, opportunities, activities;

• having physical and emotional states of well-being; and

• not being held back by pain.

For many participants, having the capacity to perform necessary or desired activities on a daily basis was an important measure of health and wellness.  For example, one participant stated that health and wellness meant “being able to get out and do stuff” while another defined it as being able to accomplish daily activities:

At the end of the day, if I feel like I’ve accomplished something and been able to meet--not necessarily set goals-- but things I felt were important to accomplish. Then I feel like I had a well day.

Independence and self-determination also were key factors in defining health and wellness, and seemed to center on one’s ability to care for one’s self and to control one’s life.

I think healthy has to do with if you’re…going towards goals that you want to achieve in life or…if you’re just settling for ‘this is it’, if you’re doing what you want to do and going in the direction you want to go, you’re pretty much healthy.

In general, most participants felt that health and wellness encompassed both physical and emotional well-being.  They described these two dimensions as inter-related and it is difficult to have one without the other.  As expressed by one participant:

It’s a little hard, having grown up in this society, it’s a little hard for me not to separate mental health from physical health, but I think they absolutely go together.

Other participants expanded this definition to additional dimensions such as spirituality and contextual factors, such as community, family, friends and work: 

Well, for me, it [health and wellness] encompasses several things: physical health, emotional health, spiritual health. So when I look at health and wellness, I look at those three … and try to look at nurturing myself in all three areas to make sure that I’m up to par in all those areas. And when I feel that I have a good balance in these three areas, I feel that I’ve achieved a good level of health and wellness.

Pain was another defining theme of health and wellness.  In most cases, when pain was mentioned, it was the absence of pain that was discussed. One participant said: “My idea of healthy is severity of pain. If it’s high – very high, I’m not feeling well. If it’s real low, then … I’m in a good position.”  Another said: “To me, being healthy and well is no pain, and being able to function normally. But right now I live in twenty-four hour pain”.  A few participants who experienced spinal cord injury mentioned that pain in their lives, while difficult to tolerate, could be interpreted as a sign that their nerves were still working; therefore a positive sign of health.

Unique Issues of Health and Wellness for Persons with Disabilities

When asked about how health and wellness is different for people living with disabilities compared to their non-disabled peers, participants suggested that people with disabilities have to be resilient and “bounce-back” in the face of social or physical barriers, understand that health and wellness exists within the experience of disability, and promote and maintain their health and wellness on a daily basis.  Similarly, participants mentioned that persons with long-term disabilities may face additional challenges around health and wellness, including secondary conditions of disability as well as conditions found in the general population.

…post-injury, you still have to cope with health and wellness issues that you would if you’re able bodied. I still have periodontal disease. I still have a heart problem… and [it’s] in conjunction with other problems that are normally associated with spinal cord injury, you know, pain, infection, ability to do things.

       However, participants were quick to emphasize that having a disability does not preclude health and wellness.  For the vast majority of participants, health and wellness is distinct from the disability they experience.  When discussing the similarities between people with and without disabilities, one participant captured the feelings and sentiments of the group by stating:

My experience being disabled and talking to other disabled people has been what we just described, and that is that my health and well-being is always on a fluctuation continuum, not because I’m disabled, but because I’m a human being.

Health and Wellness Facilitators, Barriers and Strategies

Person-centered facilitators, barriers and strategies.  On the personal level, participants said that health and wellness is related to your emotional well-being, which in turn affects your stress level, mental health, and feelings of depression.  Participants also mentioned personal attitudes, your frame of mind and outlook on life to be additional aspects that can either enhance or diminish overall quality of health, and it is beneficial to engage in health behaviors that promote physical and social activities.  For example, one participant stated:

There is nothing I can do about having MS.  But there is something I can do about my attitude…so why would I sit there and [go] ‘Oh me, oh my. I don’t want to go anymore.’ I say ‘I got MS, but that doesn’t have to affect my attitude.

I think it [having a disability] does affect your self-image. Almost always starts out to be a negative experience, you know. But I think it can evolve into something that, you know, you’re proud. Proud of your ability to get things off the top shelf in spite of your disability, things like that.

Participants identified other ways they promote and maintain personal health and wellness, which include:

• developing coping strategies;

• having contact with others with disabilities;

• staying as active as possible, including participating in physical activity and exercise;

• contributing through paid work or volunteer activities; and

• setting personal goals.

A large number of participants commented on the importance of accepting themselves as they are and moving forward with their lives. One participant characterized it as this: “It’s just very simple.  You’ve got to accept it.  And if you can’t get yourself to that point, you are in a heck of a spot.”

Community level facilitators, barriers and strategies.  Community is defined as the people around you who can have a sizeable impact on health and wellness.  Community people include health professionals, family members, friends, colleagues, support groups, churches and sports teams.   Many times these community people facilitate health and wellness, and other times they do not.  When they did not, participants spoke of strategies to reduce the negative impact some personal relationships had on their levels of health and wellness.  For example, a few participants discussed the importance of keeping some distance between friends and family members who are negative. As mentioned by one woman: 

One of the things under positive energy and mood that I’ve found for myself is there are certain people that I love dearly that I have to restrict association with, because they’re not positive. … I have one dear friend. Dear friend. But every time she sees me, not matter how I’m feeling, she’s always saying “You don’t look like you feel well.”

Participants stressed that community people play an integral role in providing social support necessary for achieving health and wellness to help you through emotional difficulties and coping with stress.  This feeling was expressed by one participant in the following statement:

I wish other people had their support, not necessarily from family but from friends or social workers or – to me, the support that I have now keeps me going. I’m getting support from people.  I’m amazed that I have it.

If you feel like somebody cares for you, I think it gives you a reason to give something back, whereas if you don’t feel like somebody cares, then, I mean, is there any point in it?

Additionally, health care providers can influence the direction of care for persons with disabilities that will either facilitate or impede on the health and wellness of their patients.  Participants emphasized the importance of :

• positive social interactions where you are valued and supported by friends/family and;

• respectful, concerned and informed health providers who treat the whole person.

Systems level facilitators, barriers and strategies.   Issues and concerns about systems centered on access and accommodation of services and opportunities.  According to one participant:

Nobody would be sitting here unless we accommodated what we’re not able to do.  We’re not able to get up on this floor unless we build stairs, and when we – society puts out those efforts to sort of assist, then disability doesn’t exist…

In addition, participants spoke of the need to be able to get out and do activities as strategies that maintain health.  However, the high cost of living with a disability, the lack of insurance coverage provided to persons with disabilities and consumer frustration with the insurance benefit process reduces the quality of health and wellness for many people with disabilities.  Participants spoke of the importance of:

• increasing access and accommodations in the physical environment; 

• receiving financial relief from the cost of living with disability, including removing disincentives to work, personal assistance services and tax credits; and

• improving insurance coverage for integrative or alternative medicine, specialists and assistive technology. 

Health and wellness barriers related to culture.  Discrimination and insensitivity towards one’s culture was identified as a significant barrier that was perceived as impacting health and wellness.  As described by one participant: 

…And if you’re African American in this society, now you’re working against a couple of other issues.  Because now, they want to look at you.   And you’re talking about being on the job, and being disabled.  They’re also going to be judging you about your color as well.

Conclusion

For the people with disabilities we spoke with, health and wellness is not just a personal issue, but an issue that is dependent on interactions with other people and health, financial, and regulatory systems.  To diagram the elements of health and wellness for persons living with disability is to draw a web of personal, communal and systemic links that support health promotion activities and behaviors.  The stronger the net, the more likely persons with disabilities can achieve high levels of health and wellness.  The weaker the net, the greater the possibility for jeopardized health and wellness.  Factors that influence health and wellness are found at each of these levels and include increasing access, provider knowledge, personal investment, social support, and feelings of self-efficacy, while decreasing costs and barriers to health promotion and maintenance.

Our recommendations for addressing these issues include: 1) expanding definitions of health for persons with disabilities to include maintenance of function and prevention of secondary conditions; 2) developing and implementing a national research agenda that explores in detail facilitators and barriers to health and wellness at the person, community, and systems level including investigating the efficacy of factors, such as integrative medicine, physical activity, and personal control over decisions and services; 3) creating consumer-based materials that educate persons with disabilities on how to practice health promoting activities and behaviors, how to find and utilize community health and wellness resources, and how to advocate for access to health and wellness promotion opportunities; 4) increasing the capacities of health and wellness providers to respond to the health and wellness needs of persons with disabilities, including education related to the need for and benefits of health and wellness promotion practices and for specific information about “best practices” in this area; and 5) examining systems issues that prohibit health and wellness opportunities particularly related to environmental accessibility and accommodation, social acceptability including issues of discrimination, and financial affordability. 

The people we spoke with were aware of their needs and desires as well as the barriers they face in achieving their health and wellness goals.  Our findings document their ability to appreciate, understand, and clearly articulate their lived experiences.  Maintaining high levels of health and wellness were clearly important, however, participants indicated that for the person with a disability to engage in the pursuit of a healthy and well lifestyle, he or she must become a health warrior and fight to engage in the practice of health promotion.  We believe this burden can and should be reduced and that it is our responsibility to remove the barriers and increase the facilitators to health and wellness promotion for persons living with disability.

1 This brief overviews a manuscript of a study entitled, "Health Warriors: People with Disabilities Discuss Definitions of and Facilitators and Barriers to, Being Healthy and Well."  The study authors are Michelle Putnam, Sarah Geenen, and Laurie Powers from the Oregon Health and Science University; Marsha Saxton from the World Institute on Disability; and Sharon Finney and Pamela Dautel from Independent Living Research Utilization.  The study was conducted by the Rehabilitation Research and Training Center: Health and Wellness Consortium, funded by the National Institute on Disability and Rehabilitation Research, Grant H133B990019.  For additional infomration, contact Mary Oschwald, Oregon Health and Science University, oschwald@ohsu.edu; (503) 232-9154, ext. 126.

Support for this Web cast is provided by the National Institute for Disability and Rehabilitation Research (NIDRR) as part of its initiative to promote greater use of disability research findings by consumers, their families, service providers, and other non-researcher stakeholders.  Specific NIDRR project support comes from RIIL (Research Information for Independent Living), RRTC on Managed Health Care & Disability, and RTC on Health & Wellness. NIDRR is part of the U.S. Department of Education, and no endorsement of the opinions expressed as part of this Web cast by the Department should be inferred.