Disability Terminology

The definition of disability has evolved over hundreds of years. It was recorded as early as 950 AD in conjunction with the word cripple. Cripple was the term used in reference to a person or animal with a physical disability, particularly one who was unable to walk because of an injury or illness (http://en.academic.ru/dic.nsf/enwiki/196193).

Disability was mentioned in the Military Laws of the United States Army in regard to a decision made in April 23, 1800, describing the policy for pensions and compensation for disabilities and deaths. The word disabled was defined therein as “any degree of personal disability which renders the individual less able to provide for his subsistence.”²³⁶ The policy continued to state “a disability may properly be said to be permanent when it appears to be chronic or of indefinite future duration.”²³⁶ Currently, the word disability is defined by Merriam-Webster’s Online Dictionary as “inability to pursue an occupation because of a physical or mental impairment; lack of legal qualification to do something; a disqualification, restriction, or disadvantage” (http://www.merriam-webster.com/dictionary/disability). In this same source, disabled is defined as “incapacitated by illness or injury; also: physically or mentally impaired in a way that substantially limits activity especially in relation to employment or education” (http://www.merriam-webster.com/dictionary/disabled).

Many federal governmental agencies define disability within the needs of their targeted programs. For instance, the U.S. Department of Housing and Urban Development (HUD) uses its own definition of disability to aid in determining eligibility for housing programs. A person with a disability is defined by federal law as “any person who has a physical or mental impairment that substantially limits one or more major life activities; has a record of such impairment; or is regarded as having such an impairment,” (http://portal.hud.gov/hudportal/HUD?src/program_offices/fair_housing_equal_opp/disabilities/inhousing). The HUD definition includes persons who have AIDS and excludes persons whose disability is based solely on dependence on any drug or other substance, whether diagnosed or not. HUD further describes a disabled household as a family whose head, spouse, or sole member is an adult with a disability. The definition of disability by federal law governs one’s rights in housing. Federal law defines a person with a disability as “any person who has a physical or mental impairment that substantially limits one or more major life activities; has a record of such impairment; or is regarded as having such an impairment” (http://www.hud.gov/offices/fheo/disabilities/inhousing.cfm). For its purposes, HUD interprets this definition, stating that “In general, a physical or mental impairment includes hearing, mobility and visual impairments, chronic alcoholism, chronic mental illness, AIDS, AIDS Related Complex, and mental retardation that substantially limits one or more major life activities major life activities include walking, talking, hearing, seeing, reading, learning, performing manual tasks, and caring for oneself” (http://www.hud.gov/offices/fheo/disabilities/inhousing.cfm).

The U.S. Census Bureau defines disability according to the type, age of person, and severity. It categorizes types of disabilities into three domains (communication, mental, or physical) for persons ages 15 years and older (http://www.census.gov/prod/2008pubs/p70-117.pdf):

Table 102-1 lists the types of disabilities, as outlined by the U.S. Census Bureau, including functional limitations, limitations in activities of daily living, and limitations in instrumental activities of daily living (http://www.census.gov/prod/2008pubs/p70-117.pdf).

TABLE 102-1 Types of Disabilities

The World Health Organization (WHO) in 2010 described the term disability in this way: “Disabilities is as an umbrella term covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is the difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives” (http://www.who.int/topics/disabilities/en/).

During the 1990s, it became apparent that the definition of disability was being interpreted differently than initially intended by Congress. The Supreme Court and lower courts were applying a more limited and stringent description to disability. This stimulated the need to amend the original act. The first significant changes occurred with the ADA Amendments Act of 2008, which took effect January 1, 2009, and focused primarily on the definition of the term disability and the rules regarding its designation. The findings of the ADA Amendments Act deemed the definition of “disability” to be significantly more limiting than initially intended by Congress. Thus clarification was needed in terms of how to determine the extent that an impairment must “substantially limit” any major life activity in order to rise to the level of a “disability.” Chapter 126, Section 12101, of the ADA Amendments Act of 2008 states, “Congress finds that physical or mental disabilities in no way diminish a person’s right to fully participate in all aspects of society, yet many people with physical or mental disabilities have been precluded from doing so because of discrimination; others who have a record of a disability or are regarded as having a disability also have been subjected to discrimination” (http://www.ada.gov/pubs/adastatute08.htm). The purpose of the amendment was to carry out the ADA’s objectives of providing “a clear and comprehensive national mandate for the elimination of discrimination” and “clear, strong, consistent, and forcible standards addressing discrimination” by reinstating a broad scope of protection to be available under the ADA (http://www.ada.gov/pubs/adastatute08.htm).

Section 12102 of the ADA Amendments Act of 2008 provides the current definition of disability. The phrase “major life activities” was expanded from the original description to read “to include, but are not limited to, caring for one’s self, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, reading, learning, reading, concentrating, thinking, communicating, and working” (http://www.ada.gov/pubs/adastatute08.htm). The ADA Amendments Act also declares a major life activity to include “the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurologic, brain, respiratory, circulatory, endocrine, and reproductive functions” (http://www.ada.gov/pubs/adastatute08.htm). Impairments are considered transitory and minor if their expected duration is 6 months or less. Other rules governing the definition of disability include “an impairment that substantially limits one major life activity need not limit the other major life activities in order to be considered a disability” and “an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active” (http://www.ada.gov/pubs/adastatute08.htm). Assistive devices, technology, or other mitigating measures have no consideration in evaluating whether an impairment substantially limits a major life activity.

Prevalence of Disability in the United States

The U.S. Census Bureau provides data on disability using several sources: the decennial census of population, the Survey of Income and Program Participation (SIPP), and the Current Population Survey (CPS).²³⁷ The American Community Survey (ACS) is a tool implemented in 2005 that also collects data on disability. Major statistical data sources on disabilities in the United States are listed in Box 102-1.

The U.S. Census Bureau’s three domains of disability—communication, mental, and physical— are incorporated in questionnaires (http://www.census.gov/prod/2008pubs/p70-117.pdf). Inclusion of questions about disability status began with the 1970 decennial census. A comparable indicator for 1970, 1980, 1990, and 2000 could not be constructed because survey questions on disability became more descriptive of the physical capabilities of a person with a disability on each succeeding survey. There was also a variation in age of the population sampled. In 1990, the population 15 years of age and older was queried about disabilities; in 2000, the age category was changed to 5 years and older. In the 2010 census, age categories of 3 to 5 years and under 3 years were added.

SIPP is a longitudinal national household survey that began in 1984. Certain households are chosen to participate in the survey, and are interviewed every 4 months for 3 years. The survey uses approximately 80 questions about activity limitations in a supplemental questionnaire on disability (http://www.census.gov/prod/2008pubs/p70-117.pdf). The SIPP questions distinguish between persons who have some difficulty with an activity and those who cannot perform an activity at all.

The third source for disability data collection is the CPS. This survey of approximately 50,000 households identifies persons who are out of the labor force because of a disability and those who have a health problem that “prevents them from working or limits the kind or amount of work they can do.”²³⁷ This monthly survey has a primary focus on labor force data for the civilian noninstitutionalized population. The CPS questions were last updated in June 2008, allowing the Bureau of Labor Statistics (BLS) to release monthly labor force data regarding persons with a disability (http://www.bls.gov/cps/cpsdisability.htm). Work disability is the only disability measured by the CPS.

The ACS, implemented in 2005, is a nationwide survey designed to provide communities with information on how they are changing on a yearly basis. This survey queries both the prevalence of disability and select characteristics of individuals by disability status. Information obtained includes household income and poverty levels, male and female earnings, health insurance coverage of children under age 19, and degree of disability among the working-age population. A goal is to help communities determine where to locate services and allocate resources. Data are collected year round. Moving the once-a-decade, long-form questions to an ongoing survey enables the Census Bureau to produce detailed socioeconomic and housing data, thereby helping leaders, planners, and businesses make more informed decisions regarding distribution of federal tax funds to states and local areas every year. The Census Bureau currently publishes approximately 80 tables delineating these data on its American FactFinder data website (http://factfinder.census.gov/servlet/DatasetMainPageServlet?_program=ACS&_submenuId=datasets_2&_lang=en).

Survey questionnaires quantify the type of disability according to age groups. The U.S. Census Disability Status: 2000 counted 49.7 million people with some type of long-lasting condition or disability.²³⁷ This represented 19.3% of the 257.2 million people who were age 5 years and older in the civilian noninstitutionalized U.S. population at that time. The Census Bureau again collected information in 2002, reporting 51.2 million people with a disability. The 2005 Census Bureau report identified 54.4 million disabled Americans. Among those with a disability, 35 million, or 12% of the population, were classified as having a severe disability, according to Americans with Disabilities: 2005 (http://www.census.gov/prod/2008pubs/p70-117.pdf). Approximately 11 million people with disabilities age 6 and older require personal assistance with everyday activities, such as bathing, meal preparation, and light housework.

Other important findings of the 2005 disability report include the following:

Table 102-2 provides disability and severe disability data for age-groups 6 years and older, 15 years and older, 21 to 64 years, and 65 years and older. Figure 102-1 shows the prevalence of disability and the need for assistance by age according to the U.S. Census Bureau SIPP survey, 2005.

TABLE 102-2 Disability Measure by Selected Age Groups: 2005

FIGURE 102-1 Prevalence of disability and the need for assistance by age. Note: The need for assistance with activities of daily living was not asked of children under age six years.

(Data from U.S. Census Bureau, Survey of Income and Program Participation, June–September 2005. Public Domain. http://www.census.gov/apsd/www/statbrief/sb94_1.pdf.)

A long-term reduction in a person’s ability to perform a normal amount of activity associated with his or her particular age-group is called “limitation of activity.” Play is the predominant activity of children younger than 5 years of age, whereas education in school is the primary focus of children ages 5 to 17 years. The major activities for persons 18 to 69 years of age include housekeeping, working, and/or ability to work at a job or business. The primary life-stage activity for individuals ages 70 years and over is the capacity for independent living (Table 102-3). In the National Health Interview Survey (NHIS), levels of disabilities are classified into one of four categories (Table 102-4).

TABLE 102-3 Major Activities for Each Age Group

From Access to Disability Data, Chartbook on Work and Disability, Appendices: Glossary. http://www.infouse.com/disabilitydata/workdisability/appendices_glossary.php.

TABLE 102-4 NHIS Classification of Disability

From Access to Disability Data, Chartbook on Work and Disability, Appendices: Glossary. http://www.infouse.com/disabilitydata/mentalhealth/appendices_glossary.php.

The estimated number of individuals having difficulty with activities of daily living in 2008 was 8.5 million and those having difficulty with instrumental activities of daily living (see Box 102-4) is 13.5 million. 13.9 million individuals reported having a selected impairment. The use of assistive aids was self-reported by 11.2 million people, and 18.7 million people identified a limitation in their ability to work around the house (http://www.census.gov/prod/2008pubs/p70-117.pdf). The concepts and methods used to define disability, ADL, and IADL are consistent among surveying and data collection agencies.

Surveys include questions on activities of daily living (ADL), listed in Box 102-2, and specified functional activities as listed in Box 102-3. The SIPP survey inquires about selected impairments, listed in Box 102-4. Use of assistive aids further classifies the degree of disability (Box 102-5).

Instrumental activities of daily living (IADL) relate to independent living and evaluate the ability to perform household chores, necessary business, and shopping, as well as getting around for other purposes. (http://www.cdc.gov/nchs/data/misc/disability2001-2005.pdf). Specific questions concerning instrumental activities of daily living further identify individuals with disability. IADLs are listed in Box 102-5.

In the 2008 Summary Health Statistics for the U.S. Population: National Health Interview Survey, of the more than 225 million people 18 years of age and older, a total of 4,329,000 individuals reported limitation in activities of daily living, and 8,923,000 people had limitations in instrumental activities of daily living (Table 102-5) (http://www.cdc.gov/nchs/data/series/sr_10/sr10_243.pdf).

TABLE 102-5 Number of Persons by Age With Limitation in ADL or IADL

Chronic health conditions are the most common cause of disability. A chronic condition is defined as one that persists for 3 or more months. Some conditions, such as arthritis, cancer, diabetes, and heart conditions, are considered chronic, regardless of duration. In 2005, 13.3 million Americans had at least one chronic illness. About one-fourth of people with chronic conditions have limitations in their activities of daily living.⁴⁰ Diabetes is a leading cause of kidney failure, nondramatic lower extremity amputations, and blindness among adults aged 20 to 74.⁴² According to the CDC, the three most common causes of disability are arthritis or rheumatism (8.6 million persons), back or spine problems (7.6 million), and heart trouble (3 million).⁴³ The top 10 chronic conditions causing activity limitations are listed in Table 102-6. Leading conditions associated with wheelchair or scooter use are listed in Table 102-7.¹³³

TABLE 102-6 Top 10 Causes of Disability Among Civilian Non-Institutionalized U.S. Adults Greater Than or Equal to 18 Years of Age With Self-Reported Disabilities: United States, 2005

TABLE 102-7 Leading Conditions Associated With Wheelchair or Scooter Use (1994-1997)

* Health conditions and impairments reported as the main causes of the functional or activity limitation.

From Disability Statistics Center, University of California, San Francisco, June 2000. http://dsc.ucsf.edu/publication.php?pub_id=2&section_id=4

Assessment of disability is different than evaluating the quality of one’s health. Identification of a disability says very little about the health status of the person. People with a “disabling” condition can be healthy regardless of the disease, diagnosis, or disorder involved. In 2001, the WHO General Assembly developed a new health classification system, the International Classification of Functioning, Disability, and Health (ICF). This system can be used to evaluate the person’s health status without regard to the disabling condition and to consider how the environment may hinder assistive technology or facilitate the person’s activities. This system recognizes participation and inclusion in society as a critical part of an individual’s health (http://www.who.int).

Disability has a significant presence in our society, with one in six Americans being affected. Legislation, expanded medical knowledge, and technology advancements allow individuals with disabilities to have increased opportunities to participate in all aspects of life, including wilderness adventures and activities.

The Necessity of Wilderness

The search for self-fulfillment and actualizing one’s potential has been suggested as one of the highest human motives.¹⁵⁹ Outdoor activities and wilderness journeys can have a powerful effect on the lives of individuals. They create opportunities for experiential learning and adventure, promote self-esteem, and build confidence. A 1990 study⁴⁷ in which people with disabilities spent 2 days in the wilderness on a river trip showed improved self-image of the participants. After the experience, 47% of the participants believed that they could do more things than they had previously thought possible. Also reported after the trip by 41% of participants was a sense of being able to participate in more activities, to seek and enjoy more varied experiences, and to perform common activities. Over 90% reported a positive experience of making new friends and experiencing adventure. Improvement in areas of problem solving and decision making (41%), human relations (76%), and self-assurance (65%) were also reported. Over one-third of the participants claimed increased effectiveness in their work environment after the wilderness experience.¹⁶³ Certainly, the wilderness classroom offers a unique pathway for personal growth.

Education and adventure groups have expanded their programs worldwide to be inclusive of people with functional limitations. Programs for people with disabilities incorporate outdoor activities such as mountaineering, canoeing, caving, scuba diving, hunting, fishing, skiing, bicycle journeys, and many other sport activities. Although no data exist for the number of disabled persons participating in wilderness activities, the number of organizations advertising to and including people with disabilities is large.

The national organization specific for a particular disability can be used as a reference and launch point leading to discovery of adventure opportunities for people with a particular type of disability. Many adventure groups offer outdoor activities and wilderness experiences to people with a broad scope of disabilities and welcome everyone, regardless of ability or level of dependency.

Canada began a campaign in the 1980s with the goal of promoting public awareness that disabled people can function independently within society.⁸¹ Great Britain has an organization, the British Mountaineering Council, that lists all the adventure clubs for climbers, hill walkers, and mountaineers. It specifically notes which clubs have accessibility for the disabled.

Ski for Light, Inc., one of the first organizations for people with disabilities, was founded in 1975 to promote the physical fitness of vision- and mobility-impaired adults. The philosophy is to replace “We can’t” with “We can.” Disabled and able-bodied people join together in a one-on-one partnership to learn from each other through physically demanding activities (Figure 102-2). Annual events include regional and international programs that teach cross-country skiing to participants with disabilities.

FIGURE 102-2 Participants of Ski for Light, 2005.

(Courtesy Craig Gray.)

The presence of physical disability does not imply or indicate lack of physical ability. There are many notable wilderness adventure success stories of people with disabilities. John Hawkridge, a climber with cerebral palsy (CP), climbed part of Mt Everest in 1988. Jeff Pagels, a paraplegic, climbs mountains using adaptive equipment, including a hand-powered mountain bike and a snow sit-ski that is arm-powered with fixed ropes and ascenders. He has climbed Mt Whitney in California, Mt Bross in Colorado, and Mt Kilimanjaro in East Africa (Figure 102-3, online). Dean Juntunen, paralyzed below his diaphragm, accesses the wilderness on his kayak. Spring and fall, he can be found running his favorite rivers (Figure 102-4). Mike Schmitz has a C6-7 incomplete spinal cord injury with limited strength in his hands and no trunk balance. He has found ways to adapt equipment and technique to be able to hunt. Erik Weihenmayer, a totally blind mountaineer, summited Mt Everest in 2001. In his 2002 book, Touch the Top of the World: A Blind Man’s Journey to Climb Farther Than the Eye Can See, he states, “The dark is a great equalizer.”

FIGURE 102-4 Dean Juntunen at a rugged kayak launch.

(Courtesy Sheryl Olson.)

FIGURE 102-3 Jeff Pagels and friends at 3050 m (10,000 feet), Mt Bross, Colorado.

(Courtesy Sheryl Olson.)

Preparticipation Evaluation for the Individual With a Disability

Over the last several decades, health care providers have increasingly encouraged more activity for individuals with disabilities and chronic illnesses. The focus has turned toward helping individuals achieve their goals despite their disabilities. For example, exercise has been promoted to keep individuals with chronic diseases and disabilities healthier. Maximizing functional independence and minimizing health risks are keys to safe adventures. Physical activity programs have evolved to help develop and maintain cardiovascular endurance, flexibility, and muscle strength.

Fitness programs for individuals with disabilities generally address cardiovascular endurance, muscle strength, and range of motion. Each individual’s limitations act as a road map for planning an effective exercise program. For example, exercise management for the child with CP would include a combination of interventions designed to improve efficient patterns of movement. Exercise planning for individuals with pulmonary disease should focus on interventions to reduce symptoms of dyspnea and maximize endurance.

The American College of Sports Medicine has proposed that problem-oriented exercise management be used to develop exercise programs for people with a variety of chronic illnesses and disabilities.¹⁷² Problem-oriented exercise management uses exercise testing to reveal physiologic dysfunction. It also directs an exercise therapy program toward problems that might be improved by training and integrates exercise into medical management problems. This approach takes components of an individual’s movement or medical difficulties and puts together a program with manageable goals.

Before participating in a wilderness experience, a complete functional assessment should be completed to help a person with a chronic illness or disability understand potential limitations. Important considerations are the person’s level of independence for transfers, ambulation, or mobility using adaptive equipment, as well as his or her demonstrated proficiency in using the equipment.

A general cognitive assessment may also be helpful in some cases. This is important for skills acquisition and safety awareness. An individual with a disability should be educated in all areas of potential risks for the given activity.

The goal of the preparticipation physical examination is to assess, educate, and prevent. It is important to assess physical capability to understand the individual’s physical requirements for a given activity. It is also essential to educate the individual about the potential medical risks. Finally, providing information to the individual and team members about potential medical complications is a way to prevent a catastrophic event. This can be done by using both the screening assessment and a complete physical examination.

Different aspects of an individual’s medical treatment may influence how well a person performs a specific activity. For example, certain drugs interfere with the body’s response to stress. In addition, risks, costs, and benefits of an activity or exercise program need to be addressed. Risks are disease dependent. For instance, if an individual has arthritic joints, increased activity, such as a wilderness hiking experience, may increase pain and discomfort. A person’s ability to achieve some components of activity depends on the deficits associated with the underlying condition, such as weakness or muscle imbalance. The risks associated with these activities often include musculoskeletal injury or exhaustion.

Costs involved in the training required to maximize participation in a wilderness experience need to be determined. This may include an exercise training program or evaluation of medications. Benefits include all activities and experiences gained from being in the wilderness with other individuals.

Appropriate physical screening should also be performed to rule out contraindications and to develop a list of precautions. The skin should be evaluated for insensate areas and extremities checked for vasomotor changes that cause pain or weakness. Vital capacity should be measured, if indicated, in individuals with muscular or neurologic impairment that could affect respiration, especially if there is a history of respiratory illness such as asthma. This may involve formal pulmonary function tests or submaximal cardiopulmonary testing.

Pulmonary function tests in neuromuscular conditions typically reveal a decrease in vital capacity. This is initially due to large residual volume and later to low total lung capacity. Vital capacity, forced expiratory volume in the first second (FEV₁), forced vital capacity (FVC), and total lung capacity are generally considered normal in the able-bodied population if they are greater than 80% of the predicted normal value pertaining to the appropriate table. If the FEV₁ is less than 30% of the predicted normal, cardiopulmonary exercise testing is contraindicated.

The presence of increased motor tone and its effect on function and joint alignment should be described. The neurologic evaluation might also include manual muscle testing. This provides information to the individual about which muscle groups may be weak. Certain compensations may be needed if an activity requires a degree of strength not available. Injuries sustained in recreational activities are often soft tissue injuries related to weakness or muscle imbalance. The evaluation should involve inspection, palpation, and assessment of passive and active ranges of motion of major joints.

Structural deformities should be noted. Conditions such as muscle contractures and associated joint deformities are frequently seen in ambulatory individuals with CP and should be noted because these may contribute to biomechanical stresses during rigorous activity.

General Preparation Guidelines

A team of people may be required to support a person with a disability during a wilderness adventure. No standards or specific guidelines exist in the literature indicating how many people are needed to safely support a disabled person participating in an outdoor sport or wilderness adventure. Each situation is unique.

Trip preparation for an individual with a chronic illness or disability is the same as for anyone desiring a wilderness experience. The first steps are to decide the nature of the activity, where it will occur, and how long it will last. Time of year and extremes of weather conditions should be considered. Information must be obtained about accessibility and any special equipment necessary to facilitate access. Inquiry about the condition of pathways and trails for mobility assist devices should be obtained before the trip.

The degree of assistance needed can range from one to five or more support people. The functional ability and needs of each team member should be evaluated in preparation for a wilderness adventure. There needs to be enough strength within the entire group to balance any limitation of a single member. It is important to realize that the most limited member may not be the person with the disability. The first time a summit of Mt Whitney was attempted by a paraplegic climber, the photographer documenting the trip was more limited by lack of outdoor skills than the “disabled” climber was limited by the lack of functional legs.

Adventure in the wilderness environment creates a change from normal ADLs. People with disabilities rely on ADL routines for maintenance of daily habits. Disruption of the comfortable and familiar can sometimes result in frustration and unpleasant consequences. For example, a change in diet can cause a change in bowel function. For a paraplegic, this is undesirable and potentially stressful. Paraplegics rely on regular bowel routines in hopes of preventing a surprise bowel movement. Trip planning should include appropriate plans for diet and maintenance of daily bowel routine.

The level of understanding that the disabled individual has about his or her injury or illness is important information, because not everyone has the same foundation of knowledge. It is possible that the wilderness participant is newly injured or was injured in a country where education was not part of the rehabilitation process, as noted in the following report:

It is helpful if the individual with the disability is able to communicate all pertinent medical information to the team leader, medical person, or a designated team member before the trip. The designated person(s) should be aware of and understand the potential complications of the illness or injury, even those not previously expressed or experienced by the individual. They should have knowledge of signs and symptoms and be prepared to make decisions and implement care plans. This person must also be able to differentiate between a life-threatening medical emergency requiring evacuation and a situation that can be managed in the field. Wilderness trip plans should include knowledge of rescue and evacuation options. Communication devices, such as satellite phones or emergency personal radio beacons (EPRBs), can be carried.

Chronically ill or disabled people may have an enhanced predisposition to complications when pursuing wilderness activities. Several questions should be considered during preparation for the trip:

Knowledge of the individual’s normal routines will aid in preventive measures, thus promoting safety and minimizing risk. Answers to these questions will also provide insight into equipment that might need to be purchased or special adjustments that need to be made on assistive devices before the trip. Adapting to new equipment should be accomplished before commencing the trip. It is important to allow time for the individual to try the equipment for ease of use, comfort, and fit and to identify and resolve potential equipment problems before they occur in the wilderness.

The National Center on Physical Activity and Disability (NCPAD) recommends the following general guidelines be followed during an outdoor experience:¹⁷⁹

With adequate planning, team support, and proper equipment, the wilderness experience can be as safe for the disabled person as for the nondisabled.

Mobility Impairments

Spinal Cord Injury

Spinal cord injury (SCI) is an insult to be spinal cord, either temporary or permanent, causing impairment to normal motor, sensory, or autonomic function. Although quadriplegia continues to be the most popular terminology used when referring to persons with injury in the cervical region of the spinal cord and with associated loss of muscle strength in all four extremities, tetraplegia is the current medical term. Paraplegia refers to persons with lesions in the thoracic, lumbar, or sacral segments, including the cauda equina and conus medullaris.^8,63 Since 2000, incomplete tetraplegia is the most frequent neurologic category of SCI at time of discharge (39.5%). This is followed by complete paraplegia (22.1%), incomplete paraplegia (21.7%), and complete tetraplegia (16.3%) (Table 102-8; https://www.nscisc.uab.edu/public_content/pdf/Facts08.pdf). The U.S. National Spinal Cord Injury Database found that 56% of all SCI cases occur in the cervical spine.¹⁸³

TABLE 102-8 Most Frequent Categories of SCI Disability at Discharge, 2000-2008

Category	Percentage
Incomplete tetraplagia	34.1%
Complete paraplegia	23.0%
Incomplete paraplegia	18.5%
Complete tetraplegia	18.3%

National Spinal Cord Injury Statistical Center: Spinal Cord Injury: Facts and Figures at a Glance, January 2008, University of Alabama at Birmingham. https://www.nscisc.uab.edu/public_content/pdf/Facts08.pdf.

According to the National Spinal Cord Injury Statistical Center in Birmingham, Alabama, there are approximately 265,000 persons with spinal cord injury as of February 2011 (https://www.nscisc.uab.edu). The National Spinal Cord Injury Association Resource Center (NSCIARC) reports an estimated 40 injuries per 1 million population, or 12,000 new cases, in the United States each year. (https://www.nscisc.uab.edu/public_content/pdf/Facts08.pdf, Facts and Figures at a Glance). Of SCI trauma patients who survive the first 24 hours, 85% are still alive 10 years later, compared with 98% of the non-SCI population, given similar age and gender.¹⁸⁴

Historically, SCI has primarily affected young adults. The average age at injury was 28.7 years between 1973 to 1979. However, as the median age of the general U.S. population has increased, the average age at time of SCI injury has also steadily increased. Since 2005, the average age at injury has been 39.5 years. Before 1980, 4.7% of the population was affected by SCI. Since the year 2000, the number has increased to 11.5% (Table 102-9) (https://www.nscisc.uab.edu/public_content/pdf/Facts08.pdf).

TABLE 102-9 Average Age of Spinal Cord Injury

Year	Average Age
1973-1979	28.7
Since 2005	39.5

National Spinal Cord Injury Statistical Center: Spinal Cord Injury: Facts and Figures at a Glance, January 2008, University of Alabama at Birmingham. https://www.nscisc.uab.edu/public_content/pdf/Facts08.pdf.

There has been a 4% percent decrease in the number of males with new spinal cord injury since 2000. Before 1980, 81.8% of persons affected were male. That number has dropped to 77.8% since 2000. A significant change in the racial distribution of persons affected by SCI has also been observed. Between 1973 and 1979, 76.8% were Caucasian, 14.2% were African American, 6% were Hispanic, and 3% were from other racial or ethnic groups. Among persons injured since 2000, 63.0% are Caucasian, 22.7% are African American, 11.8% are Hispanic, and 2.4% are from other racial or ethnic groups (Tables 102-10 and 102-11) (https://www.nscisc.uab.edu/public_content/pdf/Facts08.pdf).

TABLE 102-10 Frequency of SCI Injury by Gender

Year	Male	Female
Before 1980	81.8%	18.2%
After 2000	77.8%	22.2%

National Spinal Cord Injury Statistical Center: Spinal Cord Injury: Facts and Figures at a Glance, January 2008, University of Alabama at Birmingham. https://www.nscisc.uab.edu/public_content/pdf/Facts08.pdf.

TABLE 102-11 Frequency of SCI Injury by Race

Further detailed statistical information is available at the National Spinal Cord Injury Statistical Center in Birmingham, Alabama (https://www.nscisc.uab.edu/public_content/pdf/Facts08.pdf) and at the Spinal Cord Information Network (http://www.spinalcord.uab.edu).

Complications

Long-term secondary medical complications in individuals with traumatic SCI were analyzed for incidence, risk factors, and trends.¹⁶⁵ The three most common long-term medical complications were autonomic dysreflexia, pneumonia/atelectasis, and pressure ulcers. Urinary tract infection (UTI) is the most common infection in patients with spinal cord injury.¹⁸

Pulmonary complications, including adult respiratory distress syndrome, aspiration, atelectasis, tracheitis, bronchitis, tracheobronchitis, bronchospasm, lung abscess, pleural effusion, pneumonia, pneumothorax/hemothorax, pulmonary edema, septicemia, pulmonary embolism/infarction, upper respiratory infection, and ventilatory failure are the primary causes of death during the first year and up to 15 years following injury (http://www.spinalcord.uab.edu/show.asp?durki=32106). Other potential complications of significance for persons with spinal cord injury who choose to spend time in remote or wilderness environments include urinary tract infection, leg swelling, deep vein thrombosis, hyperthermia, hypothermia, cystic degeneration, spasticity, and spinal pain.

Autonomic Dysreflexia

Autonomic dysreflexia (AD), or hyperreflexia, is a potentially life-threatening complication for a person with a high-level SCI. For safety of the disabled wilderness adventurer, this acute condition requires a high level of knowledge and awareness for immediate recognition and treatment. It most commonly occurs when the SCI is at or above the major sympathetic outflow at T6.⁷⁴ It rarely develops in persons with a level of injury below T6, but it has been reported by persons with a lesion as low as T8.¹⁷⁰ Although most common and unpredictable during the first year after SCI, episodes of AD can occur at any time throughout the life of an individual.⁷

The syndrome is caused by noxious stimuli below the level of injury that produce an exaggerated and unopposed sympathetic response.¹⁴⁷ The reported incidence of AD is variable. Stover and colleagues reported the incidence as 15.4% in cervical injuries and 2.6% in high thoracic injuries.²²³ Colachis reported that AD occurs in up to 85% of individuals with SCI above the major splanchnic sympathetic outflow.⁵¹ Other investigators state that AD can occur in both incomplete and complete SCI and has an incidence of 19% to 70%.^34,217 The generally accepted rate is 48% to 90% for all individuals who are injured at T6 and above.³⁶ Sudden severe elevation in blood pressure is the most dramatic problem associated with autonomic dysreflexia. The acute clinical syndrome manifests as paroxysmal hypertension affecting both systolic and diastolic blood pressures.⁷⁴ A normal systolic blood pressure in an individual with SCI at or above T6 is in the range of 90 to 110 mm Hg. AD is defined as a systolic blood pressure greater than 40 mm Hg above baseline, or above 140/90 mm Hg in adults. A systolic pressure more than 15 to 20 mm Hg above baseline in adolescents with SCI, or more than 15 mm Hg above baseline in children, may be indicators of AD.¹⁵¹

Autonomic dysreflexia can readily be recognized and treated in the wilderness environment. The severity of AD can be decreased with prompt and early intervention. It can nearly always be managed successfully, but can also cause severe complications, such as cerebral or subarachnoid hemorrhage and death, if left untreated. Early recognition and rapid intervention decrease the incidence of complications.

Cause

Bladder distention/spasm or bowel distention accounts for most episodes of AD, although a variety of stimuli can provoke an autonomic response.^51,68 Bladder distention, the most common precipitant and present in 75% to 85% of cases, provokes uninhibited bladder contractions and sphincter dyssynergia.¹⁵⁰ The other most common causes are bowel problems, such as fecal impaction or constipation, and pressure ulcers.⁶⁸ Using many literature resources, Eltorai compiled an excellent comprehensive review classifying the triggers of AD by a review of systems.⁷⁴ Table 102-12 identifies the mechanisms that could present as noxious stimuli, potentially predisposing to AD during a wilderness adventure.

TABLE 102-12 Stimuli Leading to Autonomic Dysreflexia*

Systems	Causative Factors
Genitourinary	Both genders: bladder distention; plugged catheter; prolonged intervals between intermittent catheterizations; hypertonic bladder spasm; urinary tract infections; stones in the bladder, urethra, or ureters
	Male: epididymitis; torsion of the testicles; compression of the testicles; sexual intercourse; or electroejaculation
	Female: menstruation, menstrual cramps, pregnancy, labor, vaginal inflammation, sexual intercourse, ectopic pregnancy
Gastrointestinal	Constipation, fecal impaction; distention during digital stimulation; enemas; multiple suppositories; sphincteric dilation; prolapsed, thrombosed, or inflamed hemorrhoids; anal infections; peptic ulcers; acute gastritis; acute gastric dilation; gastrectasis; severe flatulence; acute abdomen (e.g., bowel obstruction, appendicitis, pancreatitis, acute cholecystitis)
Skin stimuli	Any direct irritant below the level of injury: pressure ulcers, abscesses, ingrown toenails, paronychia, tight clothing/shoes, applied splints, cast, exposure to extremes of temperature, wounds, applied tourniquets, bullets or shrapnel, burns, insect bites, pressure of hard or sharp object in bed or in wheelchair

The list of stimuli presented by Eltorai⁷⁴ includes a few specific environmental factors that could stimulate the onset of AD during participation in wilderness sports and activities. These include exposure to extremes of temperature, wounds, sunburns, and insect bites. Risk for trauma to skin or the musculoskeletal system increases with outdoor activity. Blisters and abrasions are not uncommon. Even though statistics indicate bladder distention and bowel impaction as the most common causes of AD, pressure sores and other injury to the integumentary system cannot be minimized in their significance. If GI/GU and pressure sores are found not to be the cause and AD remains unresolved, environmental hazards common to wilderness adventure, such as skin abrasions and contact dermatitis, should be included in the differential of identifying causes. It is critical for a susceptible individual and his or her companions to maintain a high level of situational awareness when involved in outdoor activities.

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