52 Key Points 1. People with SCI can continue to participate in meaningful social roles, with additional supports and assistance in place. 2. When health care providers are aware of the possibilities for people with SCI, they are better able to enhance their social participation and quality of life. 3. Health care providers who refer people with SCI and their families to appropriate resources empower them to engage in meaningful relationships, explore their interests, and realize their goals. Spinal cord injury (SCI) is sometimes seen as narrowing the scope of activities and opportunities for the person who is injured. It may be assumed that, because individuals with SCI are physically unable to perform many activities of daily living, their participation in leisure, social, and vocational pursuits is over. Observers may perceive the injury as altering or destroying the person’s predisability world and may be unable to imagine opportunities for a good quality of life in the future. Some health care providers, including physicians, nurses, and other clinical health professionals, have a similar, erroneous view of life after SCI. This is unfortunate; if the health care team views SCI as the end of a person’s ability to engage fully in life, the bias may be internalized by their patients and become reality. In fact, multiple avenues for engaging in productive and enjoyable activities are currently available for people with SCI and other disabilities. It is important that clinicians know about, and can direct their patients to, the resources that can enable people with SCI to live productive, satisfying, and creative lives. Resources like those listed in this chapter empower medical professionals with referral recommendations to help their patients. This listing includes not only medical and rehabilitation resources but also those that address socialization, hobbies, employment, family, sports, equipment and technology, sexuality, and travel for those with SCI. When medical professionals share this information with their patients with SCI, the patients become empowered to use what they learn to achieve their own life goals. The following lists of resources for people with SCI and their families have been selected because of their helpfulness and relevance as well as their general availability in print and their accessibility via computer Web sites. Some have greater public recognition than others. General information resources are listed first, followed by various types of resources grouped alphabetically by topic. Selections include informative books and resource guides about SCI; memoirs and stories of people living with SCI; and magazines, periodicals, Internet sites, and organizations for people with SCI. ADA became law in 1990. It prohibits discrimination against people with disability in employment, transportation, public accommodation, communications, and governmental activities. Interpretations of the ADA continue to evolve through legal challenges. Familiarity with the most current applications of the ADA helps people with SCI to understand their legal rights. Other resources in this section address legal rights in the specific areas of housing and accessibility.
Resources to Empower and Expand the Opportunities of People with Spinal Cord Injury
General Information
Books
An Introduction to Spinal Cord Injury: Understanding the Changes. 4th ed. Washington, DC: Paralyzed Veterans of America; 2001. Available from Paralyzed Veterans of America, 801 Eighteenth Street NW, Washington, DC 20006. An electronic copy is available free at www.pva.org.
Burns, SP, Hammond MC, eds. Yes You Can! A Guide to Self-Care for Persons with Spinal Cord Injury. 4th edition. Washington, DC: Paralyzed Veterans of America; 2009. Available from Paralyzed Veterans of America, 801 Eighteenth Street NW, Washington, DC 20006 or at www.pva.org. The book can be downloaded free at the PVA Web site.
Karp G. Life on Wheels: The ABC Guide for Living Fully with Mobility Issues. 2nd ed. New York: Demos Medical Publishing; 2009.
Maddox S. Paralysis Resource Guide. 2nd ed. Springfield, NJ: Christopher & Dana Reeve Paralysis Resource Center; 2007.
New Mobility Magazine’s Spinal Network: The Total Wheelchair Resource Book. 4th ed. Horsham: PA: No Limits Communications. Also available at www.spinalnetwork.net.
Palmer S, Kriegsman KH, Palmer JB. Spinal Cord Injury: A Guide for Living, 2nd ed. Baltimore, MD: Johns Hopkins University Press; 2008.
Memoirs and Personal Stories of Living with Spinal Cord Injury
Cole, J. Still Lives: Narratives of Spinal Cord Injury. Cambridge, MA: MIT Press; 2004.
Hockenberry J. Moving Violations: War Zones, Wheelchairs, and Declarations of Independence. New York: Hyperion; 1995.
Holicky R. Roll Models: People Who Live Successfully following Spinal Cord Injury and How They Do It. Victoria, BC: Trafford; 2004. Also available through the Paralyzed Veterans of America; see listing under organizations.
Karp G, Klein SD, eds. From There to Here. Horsham, PA: No Limits Communications; 2004.
Reeve C. Still Me. New York: Random House; 1998.
Magazines and Periodicals
Ability. Published bimonthly. C. R. Cooper Publishing, 1682 Langley Avenue, Irvine, CA 2714. Covers a wide range of medical, social, and lifestyle topics of interest to people with various disabilities. Web site: http://www.abilitymagazine.com/.
Action. United Spinal Association, 75–20 Astoria Boulevard, Jackson Heights, New York, NY 11370. Phone: 800-404-2898. Web site: www.unitedspinal.org. Available in audio format, by request.
Enabled Online.com. An online magazine providing information and resources for people with disabilities. Web site: www.enabledonline.com.
New Mobility: Disability Culture and Lifestyles. Miramar Communications Inc., 23815 Stuart Ranch Road, PO Box 8987, Malibu, CA 90265. Web site: www.newmobility.com.
Paraplegia News. Paralyzed Veterans of America, 2111 East Highland Street, Suite 180, Phoenix, AZ 85016– 4702. Web site: http://pvamag.com/pn/.
The Ragged Edge. An online magazine published by the Avocado Press, Inc., Box 145, Louisville, KY 40201. Web site: www.ragged-edge-mag.com.
SCI Life Newspaper. National Spinal Cord Injury Association, 6701 Democracy Boulevard, Suite 300–9, Bethesda, MD. Phone: 800-962-9629.
Videos
Northwest Regional Spinal Cord Injury System Web site for both text and video resources. www.sci.washington.edu. Video resources include Conversations About Living with Spinal Cord Injury; Personal Caregivers; and Getting Your Life Back after Spinal Cord Injury: Finding Meaning through Volunteering, School and Work. Other videos focus on Social Security Insurance and Supplemental Security Income, osteoporosis in SCI, autonomic dysreflexia, and hypnosis for pain management, among other topics.
Internet Sites
www.disaboom.com. A Web site with links to a wide variety of disability organizations
www.mobilewomen.org. Addresses needs of women using wheelchairs.
www.ninds.nih.gov/disorders/sci/sci.htm. This Web site is part of the National Institute of Neurological Disorders and Stroke, and provides information on spinal cord injury treatment, research and resources.
www.spinalcordcentral.org A Web site of information for people living with SCI, operated jointly by United Spinal Association and National Spinal Cord Injury.
Organizations
American Paralysis Association, 500 Morris Avenue, Springfield, NJ 07081. Phone: 800-225-0292. Web site: www.apacure.com.
Christopher and Dana Reeve Paralysis Resource Center, 636 Morris Turnpike, Suite 3A, Short Hills, NJ 07078. Phone: 800-225-0292. Web site: www.paralysis.org.
National Spinal Cord Injury Association, 6701 Democracy Boulevard, Suite 300–9, Bethesda, MD. Phone: 800-962-9629. Web site: www.spinalcord.org.
Paralyzed Veterans of America, 801 Eighteenth Street, NW, Washington, DC 20006. Phone: 800-795-4327 TTD. Web site: www.pva.org.
Spinal Cord Injury Network International, 3911 Princeton Drive, Santa Rosa, CA 95405. Phone: 800-548-CORD (548-2673). Web site: www.spinal@sonic.net.
Spinal Cord Injury Information Network, UAB Model SCI System, Office of Research Services, 619 19th Street, Birmingham, AL 35249–7330. Phone: 205-934-3283 Web site: www.spinalcord.uab.edu.
United Spinal Association, 75–20 Astoria Boulevard, Jackson Heights, New York, NY 11370 Phone: 718-803-3782. Web site: www.unitedspinal.org.
Accessible Design
Accessible design, sometimes called universal design, refers to the design of homes and buildings that can be used by anyone, with or without a disability. Accessible designs are safe and barrier-free.
Accessible Home Design: Architectural Solutions for the Wheelchair User. 2nd ed. Published by Paralyzed Veterans of America; see listing under Organizations.
Amherst Homes, Inc., 7378 Charter Cup Lane, Westchester, OH 45069. Phone: 513-891-3303.
The Center for Universal Design, North Carolina State University, Box 8613, Raleigh, NC 27695–8613. Phone: 800-647-6777. Web site: http://www.design.ncsu.edu/.
Concrete Change, 600 Dancing Fox Road, Decatur, GA 30032. Phone: 404-378-7455. Mission is to make every home “visitable.” Web site: http://concretechange.home.mindspring.com/.
Lifease, Inc., 2451 Fifteenth Street, NW, New Brighton, MN 55112. Phone: 612-636-6869. Web site: www.lifease.com.
Internet Sites
www.universaldesignonline.com/index.html.
The Americans with Disabilities Act (ADA), Disability Rights, and Advocacy
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Glial Scar and Monocyte-Derived Macrophages Are Needed for Spinal Cord Repair: Timing, Location, and Level as Critical Factors
Electrophysiological Predictors of Lower Limb Motor Recovery: The Rehabilitation Perspective
Management of Central Cord Syndrome
Neuroimaging after Spinal Cord Injury: Evaluating Injury Severity and Prognosis Using Magnetic Resonance Imaging
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