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NEW DOOR ProjectWorld Institute on Disability

in Collaboration with BORP and AXIS Dance Company

This research was conducted and funded in

collaboration with Kaiser Permanente Northern

California, the National Institute on Disability

Rehabilitation and Research (Department of

Education) and the World Institute on Disability in

Berkeley, California.

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“Hard Bodies” Sport, Dance & Movement and the

Charged Concept of Fitness for Disabled People

“Fitness? My body is hard enough to live in without having to make it fit into someone’s fitness regimen.”

Another member of the group quipped, “We all have hard bodies!” We laughed at the irony of our “hard bodies,” which is a popular vernacular term to describe our culture’s ideal of a buff, abled physique.

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Confronting the relative inactivity of the disability communityAccording to many studies some dating back

to the 80’s, people with disabilities are much less likely to engage in a physically active life.

Greater risk for secondary health conditionsWe recognize that “sedentary lives” lead to

disabling conditions

Do “disabling conditions” lead to sedentary lives?

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Our Participant Population67 male and female San Francisco Bay Area

residents with disabilities, ages 19 to 7838% people of color Disabled students, and disabled and non-

disabled teachers of fitness classes 41% self-described themselves as athletes

and dancers with disabilities 59% were not currently or previously

engaged in any fitness activity 5% non-disabled physicians with experience

related to athletics and fitness for people with disabilities

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Participant Population Disability Spectrum:Mobility impairments, including spinal cord

injury, spina bifida, spinal muscular atrophy, hemiplegia from stroke, and osteogenesis imperfecta

Visual impairmentsHearing impairments Chronic illness including rheumatoid

arthritis, multiple sclerosis, and post-polio syndrome

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The Overarching Question

Are the barriers for disabled people a version of exercise resistance that is experienced in our sedentary society by many in the general public, but exacerbated primarily by the inherent limitations of impairment?

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Specific Questions

What are the factors that intervene between a disabled person and a workable, enjoyable fitness regimen?

What are barriers and facilitators for inclusion in sport, fitness, dance, and active recreation for people with disabilities?

What is revealed in exploring and comparing the social and emotional experience of people with disabilities who regularly engage in physical activities, versus those who do not?

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Using a Disability Studies Analytic Perspective and tools

Disability exclusion and inclusion, access and accommodation

Medical/social model distinctionLanguage of disability: terms and concepts including

“fitness,” “able-bodied,” “physically challenged,” and “super-crip”

Internalized oppression: the psycho-social impact of societal attitudes and barriers upon individuals

Intersectionality: looking at the mix of cultural/personal standpoints and identities, including “the whole person” beyond disability, and how these influence both access and participation

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Our Findings Barriers: Social Exclusion Resulting from

Social Attitudes

Hollywood bodies: cultural ideals oppress everyone, but especially disabled bodies

“Fitness advice doesn’t fit us”Vast array of advice, promotions, “tips,” and

media attention virtually exclude and/or ignore non-typical bodies

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Our Findings Barrier: Structural Obstacles

Fitness industry exclusion: architectural and programmatic (e.g., inaccessible equipment and activities)

Beginnings of ADA compliance emerging with structural access, yet programmatic access greatly lags behind

Instructors not trained or comfortable with disability

Transportation to public resources are limitedFinancial limits due to low income of this

population

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Our Findings Barrier: Internalized Oppression

Resentment expressed about “super-crips” and Paralympic athletes, not only not “inspired by them” but rather an attitude of disdain

“Fitness isn’t cool in the Independent Living community”

“Fitness is for disabled people who are still trying to get cured” We asked: Is this sour grapes? “You can’t fire me, I quit!” ?

Why aren’t disabled athletes and dancers a “motivating resource” for disabled non-athletes?

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Our Findings Barrier: Internalized Oppression (beliefs, self-concept, and self-esteem that result

from exclusion)Feeling stared at, humiliated, awkward, “not

cool,” “ridiculous,” “hideous,” “a public spectacle”

Low confidence that “I could do it”Expectation of patronizing, confused, even

hostile instructors (not necessarily unrealistic fear)

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Our Findings, cont.Fear for safety/ injury/pain — highly

charged for this population“It should be free.” Unable to budget or

plan for fitness resources or activitiesResistance to the message of “It’s good for

you,” which is too close to medical model messages over lifetimes of false promises and dashed hopes for “cure”

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Our Findings and analysisInternalized Oppression, continued

Barriers to fitness closely resemble those to employment, education, transportation, health care, community access, etc.

Resonate with rejection from intimate, interpersonal relationships: You can’t participate because “your body is wrong.”

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The paradox of hopeNew hope emerging for inclusion in disability

community fitness resources give birth to unattainable wishes and expectations that fitness resources must be easy and convenient to access: schedule, transportation, class fees, request for “instructors with the same disability as mine.” As if individuals cannot tolerate anymore barriers; it must be a perfect match to needs, to take the risk.

Thus, hope became another barrier.We called this “deep discouragement”

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Our Findings Barrier: Medical System Not Yet Onboard

People with mobility impairments have highest rates of secondary conditions: heart disease, joint problems, diabetes, obesity, due to relative inactivity

Numerous studies demonstrate the health benefits of movement for our diverse population of disabled people of all ages, children, working-age adults, and seniors

A medical necessity: those with significant mobility impairments need organized and assisted fitness resources even more than people without mobility impairments who enjoy wait-bearing in their day

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Our Findings Barrier: Our Medical System Lags Behind in

Encouraging People with Disabilities“The training for most physicians does not

allocate time to discuss patients with physical or mental impairments. There is also not a good emphasis on the importance of fitness in our society in general. I have colleagues in Europe and countries around the world; their emphasis is much more on prevention, to promote wellness programs and fitness programs. Unfortunately in the US we lag behind that.”

Dr. Cindy Chang, University of California, Berkeley staff physician and Paralympic team physician

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Limits of Medical SupportRehabilitation and physical therapy:

arenas for physical activities, but limited in duration and scope

not about fun, social connection or long term health and fitness, but rather “therapeutic.”

Physicians tend . . .not to educate parents of disabled children

about physical activityto use belittling comments:“Well, he’ll never

play sports.” The delivery room physician’s remark about a baby born with a cleft foot.

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Facilitators and Motivators What can we do?

Findings from interviews with disabled athletes and dancers:“Somehow doors got opened”Family, friends, disabled peers offering

encouragement and opportunitiesFor those with acquired impairments, may

have already been active, so returned to sport or dance

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Facilitators and Motivators

Disabled athletes & dancers found: enjoyment of movement, body awareness, fun, self-expression

Sense of community with other athletes, sense of independence and self-determination, enjoyed team sports

Increased health indicators: lowered blood pressure, joint flexibility, better sleep, ease in general mobility and transferring, weight management, sense of bodily integrity and physical comfort

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What Helps Disabled People Overcome Resistance to Movement

and Physical Activity?Peer support, peer pressure, trying activities with

friends, in pairs and small groups, college credit for fitness classes, desire for better body image, desire for weight loss, class fee scholarships, work-release time to exercise.

Messaging in outreach cogent to target population re age, ethnicity, cultural and colloquial language

Collaboration and multiple outreach gestures between agencies, affinity groups, media sources

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Biggest SuccessesBringing fitness activities to existing affinity groups, and marginalized constituencies,

through collaborations:

“Doing It For Ourselves,” disabled and large-bodied lesbian and bi-sexual women, ERC

movement class

Developmentally disabled mothers, Through the Looking Glass, dance and movement class

East Bay Innovations, Community and Support Living for people with disabilities, dance and

movement class

Disabled veterans at the San Francisco Veterans Services yoga class

Spinal Cord Injury support group at ERC movement and nutrition focus

These affinity/ collaborative groups have tripled participation over ordinary

outreach to single-agency-based classes or events. Requires collaboration,

planning, transportation coordination and scholarship fees available!

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Listening and sharingThe key elements within the peer groups seem

to be: Opportunity to speak out about the exclusion Share fears and embarrassment Gain support to tryFeel “safe,” and understood, not judgedBeing listened to by peers about all the above

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Get Fit! Get Moving!

Join us for our Second Annual Fitness Fair at the Ed Roberts Campus!

June 7, 2014, 10 am to 2pm  Open to people of all ages and abilitiesHosted by WID, BORP & AXIS Dance

CompanyFree and open to the publicLearn more and register online:

www.tinyurl.com/GetFit14

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Get Fit! Get Moving!“Learn about fun options to start or

increase your healthy lifestyle from teachers and leaders in adaptive fitness and recreation.”

A dozen Bay Area community recreation programs will display and demonstrate their disability-friendly activities and demonstrate how to get moving! Adaptive Yoga, Tai chi, Physically Integrated

DanceAdaptive golf, horseback riding, boating, etc

Adaptive Bicycle Demonstrations by BORP

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Get Fit, Get Moving, cont.Info on accessible team sports, recreation,

adventures and more!Healthy refreshments served!Bring your whole family! (Activities for

kids, teens, young adults, seniors,)Outreach via fliers, social media, local

news, radio, agency visits, word of mouth.